jenwclark

Welcome! I, too, have had years of disability with a number of different diagnoses. When I read the symptom list for POTS I was thrilled, because it covered almost all of my problems. I finally had a single diagnosis, instead of a patchwork. I don't know anything about your specific questions, but you've asked them in the right place. I hope you get the information you need, and I hope you see some improvement now that you know what's wrong. Spike

Glad to know you share my feelings about Colin Firth. I, too, have seen and immensely enjoyed Bride and Prejudice. There's nothing quite like a Baliwood musical to brighten a gray day! I have to say, I wasn't entirely happy with the Keira Knightley version. Her Elizabeth was a bit too somber for my taste. Besides, in my book, CF is the one true Mr. Darcy, and any other actor pales by comparison. Sorry to hear things have gotten more exciting over there again. Spike

willows, I'm glad things are going more smoothly. (Even if it does mean less exciting stories for us ) Especially glad to hear your hubby's in less pain. Have you seen the 6 hour A&E version of Pride and Prejudice? It was one of the first DVDs I bought. It's my comfort food for when I'm sick. I never seem to get tired of watching it, although I do fast forward through some of the really awkward bits at the Netherfield ball. I hope you enjoy your newly expanded TV viewing options! Spike

dionna- I hate that invisible feeling. It's like you can tell someone something over and over, and it doesn't sink in. Then they hear it from an "expert" (or a TV show), and suddenly they believe it. Is is really that incomprehensible that I know what I'm talking about?! But, hey, here's hoping CSI has made it a little easier for people to take us seriously. Spike

I'm so glad to know you're a writer by trade! You do have such a wonderful, vivid way with words. And lucky us, we get our own private running commentary on your daily life! Thanks for brightening so many days. Spike

It definitely sounds like a good year to declare another birthday! I've had a few really miserable ones myself. I first got really sick when I was 19, and by my twentieth birthday I was way behind in school. I pulled myself together on my birthday and went around to talk to all of my professors about the situation and see if I could get caught up. A week later, I dropped out. I started grad school just before my thirtieth birthday, and again my health was declining. Gosh darnit if I didn't spend my 30th birthday exactly the same way I spent my 20th. Then there was my 16th, when I got in a yelling match with one of my teachers.... I have mixed feelings about birthdays. I hope you're enjoying your new toy. Spike

I'm so sorry. I finally dropped out of grad school a year ago, and as much as I miss physics (and financial independence), it was definitely the right decision. Looking back, I can't quite believe I stuck it out as long as I did. I'm sorry you had to give up one dream, and I hope you find another one to follow. You can say that again! Spike

I'm so sorry you're off to a rough start at Mayo. You guys are certainly due for some good news. I hope the other doctors will have more to offer. I wish I could offer help or advice, but know that we're thinking about you both. Spike

Now that you're fully alert (and not coming out of sedation), maybe you could call your doctor and ask for a more complete explanation. It seems like that was an awfully bad time for him to be talking to you about treatment decisions. Good luck.

Thank you willows. What a beautiful place to live! And your wedding outfit was just lovely. Still wishing you well with your current batch of challenges. I'm sorry to hear your hubby didn't learn his lesson about taking it easy, but I do understand how hard it is to sit on your *** all day. You all will have to send your son off on a vacation when you can get along without him. Take care of yourself. Spike

Yuck. What a miserable week. I hope your birthday is better. If not, maybe you can arbitrarily declare it to be your birthday some other day when you're feeling better. I know at least 2 people with birthdays around New Years who celebrate in July, instead. I'm sure your friends and family would be happy to make a day for you any time.

Jacquie, I'm sorry you're having such a rough time. I hope the new doctor helps. A sleep study sounds like a good idea for anyone who's worn out all the time. If we're not getting the rest we need at night, it would be no wonder our systems are so messed up. Spike

It does sound like something worth running past your doctor. Maybe she could tell you over the phone whether it's something you need checked out? The only time I've had that happen it was because I was drinking too much water. And I didn't find out that was the problem until I consulted the third doctor about it. It sounds like you've got that angle covered, though, with the extra sodium. Hope it passes. Spike

I get dizzy when I stand up, and it usually lasts less than a minute. It's not a spinning sensation for me, it's more like a wave of unsteadiness washing through my head. I also get it when I get to the top of a flight of stairs, but for some reason not on the way up. The worst time for me is when I stand up after bending over. I get the same unsteadiness, but also headache and nausea that last for several minutes. Sometimes just tipping my head forward and back is enough to trigger it. Stress, fatigue, heat, and a busy environment all make it worse. I very seldom have it when I'm sitting or lying down. Only when I'm really worn out. Or when I sit up after bending over. Different doctors sometimes read the same tilt test results in different ways. My sister is in the same situation -- she seems to have a lot of POTS symptoms, but the doc who did her test said it was negative. I hope you get some more information soon. Spike

I'm glad they got her in before October. Hope you get some answers. Spike

I am gluten-intolerant, but when my PCP ordered the test, she encouraged me to try a gluten-free diet even if it came back negative. She's a big fan of looking for dietary causes, so I'm not sure if a more mainstream doctor would have said the same. It certainly seems like it would be worth a try. And if you need any ideas on what to eat, I've got lots.

My effort to diagnose my whole family with POTS has hit a snag. My sister had a tilt table test yesterday, and the doctor says she doesn't have POTS. At first, this seemed like good news, but the more I talked to her, the less certain I became. She has fatigue, lightheadedness, tachycardia, and difficulty staying hydrated. Her blood pressure stayed normal during the test, even after the nitro, but when I asked about her heart rate, she said she thought it kept getting faster. I told her it was worth having another doctor look at the test results. Was that good advice? I can't quite tell whether I'm really thinking clearly on this, or I'm just so thrilled to have a diagnosis and I want her to have one, too. It's not really the whole family. My sister-in-law also has fatigue and low blood pressure, which many doctors have failed to explain, so I've encouraged her to ask about a ttt, but it's just the 2 of them. Spike

I thought I'd toss this out there in case it's useful. Last year, a friend recommended xylitol to help prevent respiratory infections. You can get lozenges for your throat and also nasal spray. Apparently, it makes the tissue less hospitable to infections, which is part of why they use it in toothpaste. I'm not a doctor, and I'm not trying to endorse this approach, but I thought I'd give you the info in case anybody wants to experiment with it.

I think they call that "oxygen starvation". I don't know what the mechanism is, but that might be a starting point for a web search. I used to get it a lot, but not so much anymore. No idea why that changed.

Thanks, guys. I'm feeling better about things today. I had a burst of energy yesterday, so I did some shopping and cooking, and now I've got my cabinets and freezer stocked with ready-to-eat foods. (Today's project: washing all the pots & pans) That will make it easier to keep on top of things. I hate those moments when I know I need to eat, but I'm so tired I'll get nauseated if I stand up to fix a meal. futurehope -- You're right, it's having to THINK about it all the time that gets wearing. I so envy those people for whom food is something to look forward to, rather than an all-consuming chore. Amber -- hope you made it out of the bathroom. And I wish we could all see what "normal" is like, just for a little while.

willows, it must take such creativity for you and hubby to take care of yourselves and each other, even under the best of circumstances. Still sending you lots of postitive thought waves. Spike

What a beautiful picture. Jeri looks like the cat I grew up with, especially with the slightly crooked patch on her nose. Misty was my first friend, although we had some conflicts when I got big enough that we couldn't both sit on my Mom's lap at the same time. She's been gone for long enough that the hurt has faded, and I just remember the happiness. (but I'm feeling teary, anyway.) Spike

For most of my life, I've had a hard time getting enough to eat. Sometimes it was nausea, sometimes I'd get full after just a few bites, sometimes I'd eat what seemed like it should be enough, but it was like my stomach just didn't register the food. I consulted multiple GI specialist, who were unable to find anything wrong. Then a little over a year ago my metabolism shifted for no reason I can identify. I was only eating 5 times a day, and not only was I gaining weight, but I was sleeping through the night without waking up hungry. It was fabulous! I found that I actually enjoyed food when it wasn't a constant source of stress. Well, about a month ago, it started to shift back. I am needing to eat more, which means more time and energy going onto food preparation. Also, because I'm not in the habit of eating those extra snacks, I have slipped up sometimes and let my blood sugar crash. And the last couple of evenings I've been nauseated, even though my blood sugar was stable. It's not that I don't know how to deal with this. I do. I've done it for years. I know I need to have bread and meals stocked in my freezer so I don't have to cook when I'm tired. I know I need to eat before I get really hungry, or I'll get a stomach ache. I just really, really hate having one more source of stress back in my life. Most people tell me I'm lucky I can lose weight without trying. This is one of the few places I thought I might find people who understand. I just want to know I'm not alone. Spike

Amber, I've had to work really hard to learn to be assertive with my doctors. I would take in my list of questions, then decide that half of them were "stupid" and not worth bothering the doc with. I am much better at it now, but it's been a slow process. Be patient with yourself, and always notice what you're doing right, too. Glad you're feeling less overwhelmed. Spike

A couple of things in your message caught my eye. 1. I also had a really bad withdrawal reaction from Effexor. Muscle spasms and anxiety, ended up in the ER and then the psych ward. It wasn't until I had been there for a day that I happened on a doctor who knew that going off Effexor could do that. @#%$*!!. And I also ran into many, many doctors who were not willing to look past my psychiatric diagnosis (depression) for a physical cause for my problems. 2. I've never looked at my stomach when it happens, but sometimes when I'm particularly tired I can feel the blood pounding in my aorta. I don't know how unusual that is? Glad you're finding some things that help at least a little. Spike