Lukkychrm42

Do you really mean epinephrine, or norepinephrine? I am not aware of the effect that anti-depressants have on epinephrine, but the one that is supposed to affect both norepinephrine AND seratonin is Cymbalta. Otherwise, a lot of us take SSRIs like Paxil and Zoloft and Wellbutrin.

If they found a low amount of sodium in your urine, then could that also mean that the sodium in your body is too much? Because you're not passing much out, but retaining it, instead? Unless you're not eating enough sodium at all... But I'd think that if you're not retaining sodium, then the amount in your uring would be high if you're eating enough of it. I think a lot of us can tell when we need salt, as much as some people can tell when their blood sugar is low. I can sort of feel both, and that's when I reach for the Gatorade. My other post about sodium says that the sodium in my electrolyte panel from my blood test was low, so it seemed that I wasn't retaining sodium, and I was making the assumption that my urine sodium would therefore be high. Hmm I know a lot of this can be confusing. But good luck, anyway!!!

It is sad. If it makes you feel any better, though, it's not the entire generation! My grandparents and parents would have my head if I didn't act politely at all times, especially as a guest in someone's home!! Wow talk about a faux pas! To be honest, I'm a little more depressed that the boy didn't seem to recognize vegetables... as that's certainly a worrying trend on this side of the pond! But I get the same thing here at uni. RIght now I'm dependent on a seat cane and a sling (shoulder), and you wouldn't believe how much difficulty I have pulling doors open.. and the number of people who opens one for me... (and I obviously struggling) MAYBE one in ten... And to them I'm always very appreciative. I won't even mention people giving up their "reserved for people with disabilities" bus seats not just for me, but for elderly people, pregnant women, etc... I don't remember the last time it happened. I think parents have forgotten recently that they're the ones responsible for teaching children manners, so when their kids do things like talk back or use profanities, you can bet they heard that at home!

Yeah, while I'm not exactly sure where the cutoff line is, I was under the impression that autonomic neuropathy was a type of peripheral neuropathy. For example, I have nerve damage in my intestines. From what I gleaned off the net, it seemed autonomic neuropathy would be the most accurate description, so I think I can classify it as being part of the dysautonomia (the damage, not just the IBS relating to it). Good luck!!!

I know what you mean.. if you tell people you're feeling better they seem to think it means you're cured or something. The only thing I usually do is say something to the effect of "It's a good day." I guess I haven't had a lengthy period of feeling well or much better, but if I tell someone it's a good day, then when it reverts back, I'm able to say it's not a good day, and they don't necessarily assume that every subsequent day will be great.

If I remember correctly, Florinef can cause acne... just one more side effect of corticosteroids. Other than that, for me personally, my skin varies the most with stress and hormones, so usually one week a month or so my skin is worse, and around stressful events, too. Oh and as for treatment, while I haven't found one specific product that works miraculously (Most of the most successful ones for other people dry out my skin too much), I have found that I get fewer flare-ups if I stick with the same products and don't try something new every week or so. I use a cleanser with salicylic acid, moisturizer, and whatever spot treatment I have at the moment, because they all seem to work about the same).

I've been on a high-salt diet since I was diagnosed, and especially since leaving Vanderbilt in August of 2005. I was put on florinef initially, but couldn't handle the side effects, and was switched to midodrine and kept on the high-salt diet. I was somewhat kidding about the pickles and olives, because I actually love them, but if I'm not retaining sodium either, it seems kinda silly to go out of my way to eat so much of it. I won't know what's up probably until my appointment next week, but what I suspect (and hope that it's not worse) is that they'll tell me it's either diabetes insipidus or the partial diabetes insipidus and put me on DDAVP which I thought I'd be going on in August of 2005. So I guess I'm just frustrated. But also feeling a bit validated which is nice... I go in there and tell them I'm dehydrated, and they can actually find some proof that something's up. Anyway, thanks!!

I guess I'm wondering if you're just lying down reading, and then you faint while lying down? Or sitting? or actually getting up after reading? Even though it seems very sedentary and therefore un-active, concentrating takes up a lot of energy, so in some respects it might be compared to light exercise. I don't know how it affects the heartrate, but I'd suspect that the stress that this "exercise" puts on your system might put your body into fight-or-flight mode. It really stinks, too, when you love to read! While it doesn't make me faint, I'm unable to read for as long of periods as I used to. But the Paxil has helped me a bit with that (SSRI), and it's helped me with brainfog in general, which is good as I'm a student. Anyway, I'm sorry, and I hope that the fainting doesn't put you off reading! Good luck with finding a system that still lets you read! Hugs, Megan

I didn't realize there was such a thing as partial diabetes insipidus? There are lots of us here with DI-type problems, but what I hear mostly is that our symptoms "mimic" those of DI... so if it's not straight-up DI, then the "mimic"-ing side could be considered partial DI? That's interesting.

I agree that it should probably be part of the POTS, but also things like stress, fevers, and so forth can cause BP to be higher, so it could just be a little bit of everything. But it also might not hurt to talk to your dysaut. doctor if you're worried about it.

Ok So I happened to be in the student medical center today just hanging out, (OK because I dislocated my shoulder...) and I decided to talk to the dr. about the problems retaining water. Like many of you I'm on a super-high sodium diet. She wants to send me to an internist who "likes a challenge" for my general health, but in addition to seeing my extremely dry throat and skin, she ran a CBC and an electrolyte panel. My white count is high (cold), but everything else is normal. EXCEPT my sodium. I have a very low sodium level. And this was about 2 hours after eating salty lentil soup and olives. She didn't do a urinalysis, but I imagine it would have been pretty salty! All this energy wasted on making sure to get enough salt, and it's not even working! My hematocrit was a tiny bit higher since moving out to CO, which she says is normal when people move to this elevation, and probably indicates s slightly more dehydrated state. Anyway, she said she'd probably have me sent to the endocrinologist for this, but we'll start with another visit to the internist in a week. Why oh why?? LOL that's it, I am going on strike! No more pickles and olives until I have proof that I need them! OK Just kidding. But DizzyDame made me remember all this, and so I didn't want another month to go by before talking to the doctor about it.

I love getting massages when and if I happen to have an extra $100 lying around, but it has to be a good one, because sometimes thy won't pay any attention to my joints, just the long muscle, and in massage school, I was taught to spend a lot of time on joints, because that can help a lot more since the muscles originate and attach there. (My point was that if you don't do much with the joints, it won't help with the pain!) Otherwise, I do naturopathic care for colds and the flu and things like that, especially since I can't have the stimulant OTC symptom helpers. I love getting massages when and if I happen to have an extra $100 lying around, but it has to be a good one, because sometimes thy won't pay any attention to my joints, just the long muscle, and in massage school, I was taught to spend a lot of time on joints, because that can help a lot more since the muscles originate and attach there. (My point was that if you don't do much with the joints, it won't help with the pain!) Otherwise, I do naturopathic care for colds and the flu and things like that, especially since I can't have the stimulant OTC symptom helpers. As far as the POTS and all that go, exercise is all-natural if you can tolerate any and don't overdo it. But as for herbs or other treatments REPLACING my meds, I wouldn't necessary trust the quality and regulation of the couple of herbs that can act as vasoconstrictors, and I'm not sure how other natural remedies would help with the tachycardia. I have heard some good news about biofeedback, though- I think for pain.

Wow, that's so great for you, Nina!! Hurray!!! I hope things go well with the student- that must be tough on all of you. Yay for nice doctors!!!

I was under the assumption that Lyme disease was basically chronic, and that the bacteria generally stay in the body, so ongoing treatment or at least intermittent treatment over time is necessary. So therefore, while it might cause other issues as well, what remains in the body is still Lyme disease, not merely a side or after effect. Hmm.

No they're definitely different. Systemic mastocytosis is a lot more serious. I have a friend who has it. But most of us with MCAD are controlled well enough with a light antihistamine. I hope your tests come out negative!

Hmmm- the only Italian doctor I know of in the States who treats POTS is Dr. Biaggioni at Vandy, but he's actually from Peru or somewhere in South America. Otherwise there's Dr. Furlan in Milan. But the thing is, if she was being treated for POTS symptoms that actually ended up being pheochromocytoma, then removing the tumor didn't help her POTS, it just got rid of the pheo.. and obviously if what helped was to remove it, then treatment of the POTS symptoms wouldn't have been what helped her. Anyway, this obviously doesn't refer to what you saw on TV.. but I'm pretty sure that there are some docs at JH who treat POTS, though I can't help you with names... sorry!

I don't know- I get these spells quite often, and I just thought it was because of not retaining water as well as the hormonal things going on upon standing. Although I'd like to find a way to retain it better, I've never thought of it as a really major problem... yeah it's no fun when you can't get enough, but unless you've been losing water through other means over the past couple days (extreme diarrhea and/or vomiting, I mean), I wouldn't personally think of it as being something to worry about. However, if it's incredibly excessive (like downing a gallon in a go, or more, or needing to do so, that could be a sign of something serious, and you should probably go to the doctor. If it's less noticeable, but still bothering you, maybe you could put in a call to your doctor to just say, 'Hey, do you think this is a problem?' maybe tomorrow or watch over the weekend and do it Monday. (Why do these things always hit on a Friday?) Anyway, just my 2 cents. I'm sorry, though- it really stinks!!

I agree that it depends on the person- many POTSies sometimes run temperatures *below* normal... my normal is more like 97.8-98, so you may have to judge if there's other stuff going on. Also, it is normal to fluctuate throughout the day, like your weight and shoe size, too. For me, I would consider anything from my normal to 99.5 or 100 to be low-grade, but if you've got a reason to fear infection like you have a PICC line or open wounds or I don't know what else, you might have a set temperature at which you need to worry. So I guess with Lyme, it might be helpful to continue with what you're doing, so you can maybe figure out what's normal for you, and at what point you'd need to start antibiotics. Maybe some of the Lyme websites will have this kind of info, too? Good luck with the specialist!

Wahoo that's awesome! I hope it goes well for you!!

While I agree that getting vitamins from their whole foods forms is likely more potent and beneficial, a lot of POTS patients have difficulty getting adequate nutrition, so I personally think that taking a multi is a wise choice, and the chewable or dissolving forms if they are easier to tolerate for you. I generally get my vitamins from the health food shops, but the main difference between those and other brands are that the health food store ones often have more naturally, plant-based inactive ingredients, like binders, plant sterols, etc. The vitamins and minerals themselves are often in the same form, though the source may be different. I haven't noticed a laxative effect with magnesium oxide, and I definitely go in that direction and have never needed laxatives, but I also wasn't aware of a potential one. As people have said, sometimes we have more sensitive systems overall, but since we each may react differently, I wouldn't worry about it unless it causes problems for you or your doctors have advised you against it. Also if sugar substitutes affect you negatively, then it might be likely for those in vitamins to do so, too, but it shouldn't be too hard to find one without sugar (especially in the swallow-able pill form). Anyway, good luck finding something helpful!!

While I can't speak specifically about what you may be experiencing, since I don't really know what kind of pain you're talking about, dysaut. definitely wreaks havoc on our hormones, and changes in hormones may cause tenderness and pain.... I hope you figure out something soon!!

That's lousy advice, if you ask me. Sorry you're dealing with this and him! I have the opposite problem as you, so my own experience wouldn't help, but if you can keep ensures down, can you keep on them and try to eat a few solid foods, like those low in fat and fiber, in addition? I wasn't under the impression that gastroparesis or delayed- emptying necessarily coincided with inflammation, so have they looked into what the inflammation is about? I have chronic inflammation of the stomach- no idea why or what, but I don't have IBD, and was put on meds to actually slow down my emptying (like i said- opposite!!), and I just hope that there's not more going on with you than dysaut. related problems. Anyway, sorry I'm not much help. Good luck, and maybe it'd be worth finding a new GI doc?

OK I know there have been topics like this before, but my ideal BC would be non-hormonal but would still stop me from getting a period. The IUD is causing some problems, and I may need to get it taken out. Does anybody know if the low-dose pills have fewer side effects, or if one hormone has fewer side effects than others?? Please share your experiences with such things, if you will! Thanks! Megan

Thanks, all! Have a great weekend!!

Yay! I leave tomorrow for Colorado! (4 days of driving, actually). I'm starting my senior year! I just hope I can handle it!