Lukkychrm42

Yeah, I'd hoped that going on BC would help that, but it didn't. Someone recommended to me to use glycolic acid. I've tried Proactiv, all various salicylic acid and benzoyl peroxide, tea tree oil, witch hazel, and pretty much every brand at the store. Then I saw "Aqua Glycolic" at the pharmacy. It's about $25 for a month's supply- there's a cleanser and toner, too, but I just use the face cream at night. It's brilliant! My face looks better than it has since I was 16! I still get a couple, usually around that time of the month, but they don't last very long, and in general the only complaints i have about my complexion now are its pallor and my undereye circles! LOL. Believe, me, I was ready to try anything- my skin is a strange combination- it's definitely oily t-zone and dry cheeks, but my oily t-zone also gets dry, and anything drying is too harsh and makes my skin peel. I use cetaphil moisurizer in the morning, and this stuff at night. (It's dermatologist recommeneded, and I use the "noncomedogenic, pH balanced for gentleness" formula.

Hey, I'm so sorry you had such a lousy experience. Obviously, not urinating for 24 hours is not normal, and I'm sorry everyone was such a loser. I hope you're feeling better now, but it might be helpful if, especially if Grubb is your doctor and he finds out that they refused to help, to get a prescription or standing order for IV fluids, so that when your gastroparesis acts up, you can just go in, hook up for a few hours, and then go home. I don't have one, but there are some here who do. Hopefully the ER peeps would give you less grief that way. Hugs, Megan

Well at Vanderbilt they are doing research, so first of all they're obviously familiar with dysautonomia. Are you going there as a research patient or with an appointment? Were you not ever diagnosed with a TTT? In my experience, the doctors in general have tended to test first for the more common/likely problems, and then done further investigation as needed. It seems strange to me that, unless your symptoms are so bizzarre that they end you under the care of Dr. House, they would first look at rare diseased... I mean, statistically speaking being rare, while possible, is not necessarily probable... and as the initial diagnosis of the simpler thing doesn't seem to fit, then new tests, new doctors with new ideas. When you're talking about "functional disorder" with fatigue, I would think of anything congenital or acquired that affects the way the body works- which isn't exactly a narrow topic. .. So basically it sounds to me that you need to find new doctors, not ones who for whatever reason (wanting to publish?) seem to be unable to consider YOUR best interest. I'm pretty sure that Vanderbilt and Mayo don't work that way. As research facilities, I don't think they can afford to- FX if you were to do a med trial at Vandy, you'd have to meet the criteria of the patient they're trying to represent, or what would be the point? So they test you and all to make sure you have these things. It seems unscientific to start with the most narrow possibility, rather than start broad and work your way down. So I'm pretty sure Mayo would be good for you, too. Good luck!!

I've been on Paxil since last August. I've been on 20 mg per day the whole time, and while I got all those weird side effects at the beginning: grinding my teeth, feeling numb, and stuff- I've basically done well on it. I didn't think you were supposed to skip doses of SSRIs, though- how come you have been able to do that one only half of every month? Does it last longer in your system? I haven't tried or needed to try any other SSRIs, but if I did I would give just about anything a shot.

I'm thinking of you and always sending lots of big hugs and love out your way. Best of luck with the surgery and recovery!! XOXOXOXOX Megan

Reports currently state that there have been 32 confirmed victims (and the gunman who killed himself). They do have a good-sized police force, but the campus is huge. What I think is more scary is that there were about 2 hours between the two shootings- first in a residence hall and then in classrooms. They assumed that the gunman had left campus, and they decided not to go ahead and cancel classes. I sure wouldn't come to school knowing there had been a shooting in a residence hall and the gunman hadn't been caught! That was a huge lapse in judgment, I think. The second guy, whom we've seen in handcuffs, is being called a "person of interest," and not specifically a suspect. The gunman has not been identified. About half of my high school feeds into Va Tech, which is almost as big as my uni here in Colorado. It bothers me that they kept people updated via e-mails.. the people who were in classes at the time, and ended up as targets weren't necessarily able to check e-mail! Surely we're not that dependent on technology yet, right? Plus the schools have contact phone numbers, surely there could be a phone tree of some sort in place? At least an automated message or something. That's all I have in me right now. Love and hugs.

Melissa, I hope you're warm and comfy in your own bed now. Take care sweet girl, and I'm sending lots of love always.

Hi there, I seem to have been asleep for the previous discussion , but I just want to say thanks for being here at all! I won't gush with overwhelming praise, because I don't want to embarrass you, but it means a lot to us. I have had my share of know-it-all doctors and various opinions of "fainting is absolutely normal" and "you're making a big deal out of nothing," but these people get kicked to the curb pretty quickly! And then there are the gems... who go beyond the call of 9-5 and really want to know how you're doing... and are truly ecstatic over improvement, not to mention the research, collaboration with other doctors, etc. (I'm including my physical therapist in this gem category!!!!!) When in an ER setting, I just to my best to educate the staff under difficult circumstances, but thankfully these are few and far between. Other than that, rather than assuming every new doctor's appointment will lead to a miracle solution, I treat each visit (more for new doctors) as an interview- is he/she willing to work WITH me, is he/she compassionate or narcissistic, will he/she try to figure out what's going on or just whip out a prescription pad, and am I comfortable here? If the answer is no, then the doctor gets a swift "You're fired," in the words of my friend Ali. (This is kinda random, but I have to say, I'm fairly impatient in a lot of ways, but my doctors work with non-dysaut related life-threatening cases, too, and I feel very humbled when I'm in the room waiting and the nurse informs me that the doctor is with a patient in the hospital or in emergency surgery, or even when they take phone calls from other doctors. Not to say that POTS doesn't seriously impact my life, but it really makes me feel small, especially knowing so many who are dangerously ill and having just gone through some pretty scary stuff myself over the past 2 months.)

If you do a search on vitamin D in this forum, you'll come up with a lot of posts!!! For some reason, vitamin D deficiencies seem to be quite common among patients with dysautonomia. As far as I know, this was a relatively new discovery, and I imagine they're still looking into the implications. No one has tried to suggest that it causes our symptoms, but I don't suppose it would help the allover wellbeing. If you asked me, I would suppose that since we are supposed to manufacture vitamin D through sun exposure, there's likely an autonomic connection in their that for some reason makes it difficult. Also, since studies show that most, though definitely not ALL, of us are of northern european ancestry, there's genetic implication in there... and as far as I know this does not necessarily include the post-viral crowd... and since light skin is supposed to facilitate vitamin D manufacture by letting us absorb the sun's rays, maybe it's more of a problem in this crowd. Anyway, that's just my guess. I know that I'm more often indoors than I used to be, and this probably doesn't help, too! I just make sure to take my vitamins.

Hey there, Some doctors mistakenly believe that a POTS diagnosis depends on a drop in BP on standing. The only criterion for the diagnosis is the increase in HR, though- although almost all of us experience a whole lot more than just the racing heart feeling! There are many people with POTS who DO have blood pressure that drops on standing, but this is not from the POTS alone. Some patients' BPs stay the same, and others, like myself, have BP that goes up on standing. Mine typically goes up and then crashes after a while, but typically hovers around normal to low normal at rest. Orthostatic hypotension and Postural Tachycardia Syndrome are not the same thing- they can be related, but they're not synonyms. Some doctors get thrown off by the spike in BP, but since some of us go into crazy autonomic storm fight or flight states when we stand up, much as one's BP goes up when the body is stressed, this situation is no different. I hope the ANSAR testing helps them to treat you. Take care!

Hey guys, Thanks for your well wishes. I'll update more later, but I just wanted to let you know that I'm now out of the hospital, and my pathology reports were negative for any cancer.

Melissa, I'm sending boatloads of love and hugs over to your fish bowl. I hope you're feeling better soon. Megan

Hmm it's immediate to a certain extent, but especially with coming off of the Florinef, maybe the dosage isn't high enough for you, esp. if your BP is too low and HR too high. I'd say try another couple of days and then call the doc again. Hope you're feeling better soon!!

Hey guys and gals, I'll be at the hospital in 12 hours for my mediastonomy, thorascopy, etc. The fun stuff is that they'll be putting in a trach tube, foley cath, and putting me on a ventilator. I'll be in the ICU for awhile, so I won't be online much! If you want the details, you can go to my CB page, for which I'll PM you the link if you want. Take care everybody!

Good luck with everything!! I hope you heal well and start feeling better soon!! Lots of love, Megan

Hi, Thanks so much for posting this! I'm so sorry Ernie's been stuck in the hospital for so long. I hope they can figure out something to help. I also hope that her doctors are in contact with the specialists!!!! Feel better soon, Ernie!!! Lots of love, Megan

Hi there, A lot of us can date POTS starting to a specific time period, especially if it came on after a virus. If it came on in adolescence, and especially if you're a tall, slender girl, it may likely to be primary partial dysautonomic (one kind that is suppoedly likely to go away by the early 20s). I've had it forever, but I can't date it to an illness or anything, and I haven't grown since I was 12! I didn't know until a year ago that mine was from Ehlers Danlos Syndrome III AKA Joint Hypermobility Syndrome. If you go to the dynakids webside and look under resources, there's paper by Dr. Grubb on the postural tachycardia syndrome that kind of breaks it down. It may take time to figure it out, but it can help guide the appropriate treatment.

Hi there, I'm sorry you're so nauseous. Hopefully it will pass quickly. I don't have gastroparesis, but nausea is still a common symptom for me when I'm upright. Although, it's definitely decreased in the past 10 months or so. It seems like there may be a link with blood flow... Also, there may be nausea as a side effect for some of your meds- might want to recheck those.

OK anyone who will generalize about all people with certain illnesses needs to be FIRED! Seriously, please find someone who's willing to work with you rather than against you.

I saw the surgeon today, and will plan on having the biopsy early next week. He's doing one blood test first to rule out myasthenia gravis, but he really doesn't think that's what it is. But that's the plan- during spring break means I don't have to miss out on classes, which is really nice!

Was that doctor being serious when he told you to start smoking again?!!! There are many other ways to raise you BP besides smoking! And they don't all involve pills!!! My goodness. That's scary. Anyway, I'm glad you're back, and I hope you are doing better soon. Take care!!

Umm I vary quantities a lot, so there's not a specific amount of spices that I stick to- just add a little and taste!! As for soy sauce, if you're abstaining from it for gluten reasons- FEAR NOT! There is such a thing as soy sauce without wheat- check out san-j's wheat-free tamari. Yummy! Otherwise, Braggs Amino Acids has a pretty similar taste to soy sauce, I think it's not fermented or something, but it's also wheat-free, additive-free, etc. It's got less sodium, too. A boullion that I really like is Rapunzel's vegetable broth with sea salt. It's got enough seasoning in it that you could use 2 cubes in a pot and not really need anything else. But it is without lactose and MSG which you find in so many other stock cubes and cans.

So I've just come back from the surgeon, and apparently my description of swallowing difficulty was not in line with that which a patient with MG would experience. It's definitely a newer symptom for me, and apparently it's difficulty initiating the act of swallowing, as opposed to things getting stuck or difficulty with food going down. I notice it more when it's just saliva, and I don't seem to have problems with drinking or food. So does anyone know if this might be a dysaut thing? I know for me it's hard to tell where dysaut ends and something else might begin. Thanks in advance!!

This is just to say that there's nothing wrong with Marmite. Yum!!!!

Hi there, I'm sorry you're going through so much- and so young, too! As for problems with your school, PLEASE contact DYNA at www.dynakids.org because they have a whole lot of experience with these issues. You can e-mail, but the phone numbers to call are also under the Contact Us section toward the bottom left of the page. As for the symptoms you've listed- you're right, a lot of them are probably POTS-related, and lots of people here have had gallbladder issues, too. As for the immune system, I really don't know- there could be something else going on there, and I hope you are able to keep seeing doctors who will be able to help you. For the POTS, if you've checked out the main DINET site, there's a physician's list. Anyway, I hope you start to do better quickly. Take care and be sure to let us know how you're doing! Lots of love, Megan