Lukkychrm42

Hi, I just wanted to say that I hope you have a better week!!

wow i'm amazed that u can exercise in the morning! Is it possible that when you work out it seems there's a reason for a high HR, so if you'd have a super-high HR in the morning, you can't tell if it's from exercise or not? And maybe later in the day it is just relative? Sorry, I definitely can't really help here. Feel better soon!

I get these feelings rather often, though more often the clammy hands than feet. I get hot flashes so often, winters can be miserable because it's 20 degrees outside and I'm cold on the outside, but sweaty and hot under the layers- or even in a tank top.

Hi there- there are a number of things to try- some medicinal and others not. Apart from gatorate, of course, you can stick with food that's salty- I only drink gatorade when I have to. Also, if you can do cardiac exercise, that is supposed to help blood volume. If you can't eat salt, there are salt tablets, but those should only be taken with food or they can upset your stomach. Also, there are epogen/Procrit/erythropoetin which act as a vasoconstrictor AND build up red blood cell volume. Florinef is supposed to help you retain salt, minerals, and fluids, which should help with volume. DDAVP or desmopressin helps you retain water if you find yourself peeing too much out like many of us. That can help you retain plasma volume. Anyway, let us know what you decide on. I think florinef is usually the first step for this, and otherwise they'll want a lot of lab work. Take care!

Tanti auguri, bellissima!!!!!!!!!!!!!! I hope your new term is going well. So are you teaching at all this time, or strictly going to produce an amazing work over the next few years? Take care!!!

That is definitely a lot of thorough testing. To me it seems like deciding on it may not get simpler than do the pros outweigh the cons- what are the potential benefits versus the potential risks? Good luck and let us know what you decide!

Absolutely! You are not your illness. Good for you. Sorry, I'm not feeling verbose at the moment- but keep it up and take care of yourself! Hugs, Megan

Hi, Yeah he just threw the CT in for the aorta bit. I've been having a lot worse symptoms lately, including more breathlessness, more dizziness, worse balance, weakness, and more malaise- but any could have been attributed to POTS, too. I just have to get through tomorrow and then will hopefully know more!! Anyway, I'll let you know what's up. THanks! Oh man I am so impatient! I've been zoned out all weekend! Thank goodness it's nearly Monday!!!

Hi there, I suspect that I'd been having the tachycardia for years before it was picked up on the Holter monitor. I don't know about others, but I often feel the hard beats when it's slower, but often when it speeds up, the beats are so light that I don't feel the pounding. I think that when I don't feel it, there's something to do with the pulse pressure and/or my BP is either way high or way low.. I can usually feel it if I try, but sometimes the doctors and nurses can't even find it without a machine. Good luck with your genetics appointment!

Hey everybody. I had my CT scan yesterday- the IV was lots of fun and left a nice big blood blister, the contrast fluid was freaky feeling, but it only lasted about 2 minutes. While I was in there the doctor called and said he wanted to discuss some medicine changes... by the time he called back 3 hours later (6 pm), he said he didn't want to change angthing yet, because they found a "mass" in my mediastinum (behind my sternum, between my lungs and heart), and he said he had already talked to some doctors on my behalf who wanted to squeeze me in, and they would call me ASAP on Monday with an appointment time with a pulmonologist and to decide on a biopsy and treatment. Obviously they won't know if it's anything malignant until a biopsy, but right now based on the CT scan, it did not appear to be a cyst or calcium deposit or whatever. Anyway, I guess that's my excitement for the week- something to keep me twiddling my thumbs until Monday morning, anyway. Don't worry though, I'll let you know what's up. Because I won't get my DDAVP until it's out! Grr!! Oh sorry, BTW my aorta is fine.

For me it was to rule out IBD. They tested me for Celiac disease and checked various vitamin and mineral levels to see if there was a malabsorption problem, but when that came back OK he wanted a colonoscopy and upper endoscopy because of my various GI symptoms. In the end it was nerve damage attributed to autonomic neuropathy, and I now take a medicine to help "slow me down".

I was given IV fluids and oxygen the whole time, but my BP still crashed when they gave me the Versed, so I spent most of it awake. The demerol didn't help that much. Just make sure they take what precautions they can, and hopefully they'll be ready for anything. Good luck!

Maybe it depends on the purposes for which you're having the tests as to what you need to do? Are they doing it supine and standing? The only time I've had mine tested like that was during my posture study at Vandy, and they could see how much they went up on standing. From what I found, it seems they want to know your sodium intake and excretion, because that can affect your results. If they're trying to determine it as a cause of hypertension, than it seems obvious that you should take this preparation, which also seemed to involve weeks off of meds. BUT if they're doing it for other reasons, then they MAY (and I might be optimistic here) know what they're looking for? Maybe contacting someone higher up on the totem pole might give you some more answers? I know nurses can be wonderful, but when they're not- they're really not. Take care!

I haven't had a period in over 3 years, since before getting a Mirena IUD. It's got a continuous super-low dose of synthetic progesterone (levonorgesterol?), and stays in for up to 5 years. Supposedly 20% of women on this have the same side effect of amenorrhea, but I don't know if there's a commonality that allows this reaction. I was thrilled!!! But I'm actually getting it taken out next week because it causes me pretty bad continual breast pain, minor to major cramps every day, and I've also gained 3 bra sizes. I was already a C. I plan on sterilization eventually, but I think I'll go au naturale for awhile (plus diaphragm). But I'll see how I do off of hormones... will let you know.

That is so cool! While we never read about English or Scottish literature, we get a lot of the medieval journals for Italian works, too. So that is quite an accomplishment- well, not just the article, but all of it!!

Actually I think you might be right- I just checked the EDNF page and while certainly the vascular type seems at most risk of problems with the aorta, it said there was such a heterogeneity among the EDS types that screening for aortic dilation should not be limited to type IVs. Hmm. I'll let you know how it goes!

Hi friends, I saw a new cardio yesterday, and while it seems he might be helpful in the POTS arena (apart from wanting to refer me to Dr. Grubb), he seems to think that with EDS I'm at a higher risk for aortic dissection. Am I right in thinking he's probably confusing EDS with Marfans? Unless I had the vascular type, which I don't. He wants me to have some sort of angiogram to check on my aorta. Anybody have a clue? Thank ya muchly, Megan

Hi Poohbear! And thanks to everybody for the updates. I'm so sorry you're having such a miserable time. I'm sending lots of healing prayers and thoughts your way. Hang in there!! Heaps of hugs, Megan

Hi there! I know I'm not around much these days- reading a lot but not posting as much. But I'm still thinking of you guys often!!! I just wanted to share some wonderful news- From September I will be a postgraduate student at the University of Manchester! It was my first choice, and I'm still jumping-around excited. Hurray!! I'll be getting a MA in Translation Studies with a focus on literary translation from Italian to English. AND- new legislation as of 2006, all international graduates are eligible for a one year work permit after they graduate. This will ease the pressure off a bit as I will probably be working free-lance. Hurray for the UK! Lots of love from the beautiful Rockies, Megan

Seeing if medication helps or not is sometimes frustrating. Especially waiting out the initial side effects. It might help to look at the big picture to see if you're doing better. For example, without expecting to feel at 100 or even 80%, are you having more good days, or more time in which you can do things than you could before? Remember, the tachycardia on standing is really a symptom or sign, and not the primary problem. For example, a lot of us have our worst time in the morning, so I think- hey, this morning was pretty easy, or wow, mornings have sure not been fun lately. And how often am I needing to sit down or lie down? Am I concentrating on my schoolwork well enough? I might crawl up the stairs and crash at the top and still have a relatively low HR. OR I can be lying down at night and reading in bed with a HR of 120 for no apparent reason. I think it's all relative! How do you feel, as opposed to how do you think you should feel based on your vitals and meds?

i don't know if there are people really sensitive to that type of thing, but I've never had problems with cough drops. My favorite are Ricola herbal drops. Yummy!!! (you can get them sugar free, too.)

I find it interesting that it's too fast without diarrhea. Mine is definitely too fast, but usually in the diarrhea form. I take Lotronex, which works fairly well, but it may be hard to find someone who prescribes it... My problem is the autonomic neuropathy in my intestines which allow the diarrhea, rather than my stomach... do you find that even though it's not diarrhea, there's undigested food matter in it? Have you been tested for digestive problems?

I get that all the time- I call it hot flashes. It's basically hyperthermia and often is accompanied by excessive sweating. I haven't found anything that helps yet, though. I'll let you know when I do!

Hey everyone, I'm back in school with 3 months until graduation! I'm also tutoring, and although I'm busy and a bit worn out, I'm mostly anxious to get through the semester. Now, of course, my meds are really not working. In the past week I've been taken off the labetalol, upped my proamatine to every 3 hours, and since Wednesday was back to labetalol just once a day. But It's pretty much... lousy. I do what I have to, but I use my seat cane a lot more than I'd like, and if I don't have it I need it. My cardiologist, Dr. A. in Virginia wants me to fly back to see him- and he knows I'm 2000 miles away. I know many of you travel quite far to see the doctors, but he's talking about in the next couple weeks, and while I know it's technically feasible, it's so much to miss with 6 classes including my thesis. Of course I don't want to imagine the alternative, either! I WILL finish this semester! So anybody have any clues what might be next on the list to try? I've done and failed toprol, florinef, propranolol, midodrine, betaxolol, and labetalol. The healthcare plan I'm on means that it's cheap to see the doctors, but medicine is limited coverage, and I'm already paying $650 for a month of proamatine, so i know procrit is not going to happen at the moment. I'm so stressed out right now- sorry I didn't mean for this to be a rant... of course, I was sexually assaulted last Saturday by a supposed friend.. but my wonderful guy came here from the UK yesterday. Just more things not to have the energy for, I suppose. Anyway, I know I'm not the only one here not doing wonderfully, but what other things HAVE worked for you guys? Thanks

Insurance might cover it if you get your doctor to write a prescription... but I got mine from the pharmacy, as they had one behind the pharmacy counter. You can find them online if you google cane or seat cane, and basic ones really aren't all that expensive- I think mine was $30. Also, mobility stores should have them.