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Poohbear- Really hope you're feeling better soon! I'm glad you got some validation on your gut decision to keep your ovaries. Medical intervention can be just the most wonderful thing in the world, but I tend to believe that it's something that should be done as little as possible to keep it at 'miracle' status! Focus on getting well now! You're in my prayers.

We are all different, and she just has to decide based on what's right for her. I'm writing to encourage her to listen to her heart and body! We 'know' more then we think we do, and it's easy to become confused b/c the doctors are supposed to be so smart. My story- I had ovarian surgery during which they took about half of my right one out and discovered that my left 'ovary' was just a lump of undeveloped tissue not connected to anything due to a congental defect. So they left a little more then half of the right one in, covered with a special material that's supposed to help prevent cysts, and (because I'd said I wanted as little out as possible) left all the other stuff in place. The doctor suggested that they give me a shot to stop the ovarian function to help it 'rest' and start me on HRT. Even though he laid out all these reasons, I still just felt like it was the wrong idea, and I have never regretted that decision! Sure enough, several months later, my hormones were back to normal levels (thus disproving a PCOS diagnosis and a few other things- but that's another story) and I felt much better. Yes, I did have mood swings, etc., but instead of hormones what worked for me was lexapro, which, as it turns out, also helped with my dysautonomia symptoms. So the bottom line is this: if she's uncomfortable with having her ovaries taken out, then she should not. If she really feels it would be best, she should. All you can do is consider the medical science, consider the consequences, do your research, and, in the end, make the decision you feel best about regardless of what others may be pressuring you to do.

and sometimes it can be all three in the same week! No, I know what you mean though. When you feel well, you're like 'no, I'm not sick.' When I'm going through an 'upswing', I tend to not visit this site very much and basically forget I'm sick. (Except of course for taking the meds everyday). Then I start feeling bad and I pop back up here whining about my symptoms again! And everytime I start feeling better, I think maybe I'm cured, and everytime I start feeling worse, I worry that this is progressing. The truth is that none of us really know what's happening tomorrow, which is hard to accept. The best thing to do is just to try to take it day by day, and take care of yourself- even when you're feeling good, it's still important to remain hydrated, etc. Plus, times when you're feeling good are the best to advocate for dysautonomia awareness. Not that we're going to have a march on washington (faint on washington? I could just see all of us lined up at the capital now...). But research indicates that this is probably underdiagnosed and there are probably so many people out there who are just being blown off by doctors or have been misdiagnosed b/c they have a relatively mild case. So those of us who can go out in the world have sort of an obligation to do so to spread the word. Okay- off my soapbox now...

I go to the MVP/Dys center in B'ham, and I really like it. It's definitely worth being tested again by them, since they know more what to look for- when I went, they did a 'spot' echo, even though I'd just had one done, and found MVP that the other echo missed. (My first one was just a bog-standard lying down test where the technician didn't really take seriously that a healthy looking 24 y/o could have anything wrong with her heart.) And on both the stress test and TTT, they repeatedly asked if I was okay and let me know I could stop whenever, then helped me down off the treadmill (cause I was dizzy), got me water, helped me sit- all just as a matter of course. Little things, I know, but it was nice not to be treated like I was crazy for being lightheaded after the stress test or like I was a burden to the staff. As for the doctor supervision thing- I've actually never had tests like that supervised directly by the doctor. Don't know if your doctors are really good or mine really bad, but there you go! My previous echo was just done by a technician and then I had to wait for days for the results (other then what he told me). So I was pleasantly surprised by the fact that the doctor gets your results and interperts them with you immediately. Finally, I like it because they 'get it' like other doctors don't. The entire practice is built on this speciality, so the doctors, nurses, staff, and other patients make the office feel very welcoming. They listen to your concerns and take a helpful 'whole life' approach to making you feel better. But I've never felt judged for 'backsliding' on lifestyle stuff like at other doctors I've been to. For example: they're real big on how caffeine is bad if you have mvp or dysautonomia. While I've cut back, I haven't cut it out entirely- I took the bar this summer, and there's simply no way to get through it without some! When I told them this at my last follow up, the Dr. said 'Oh, I understand that! But it's good you've cut back- keep trying to eliminate it and stay hydrated.' Other drs. I've been to act like if you don't just live perfectly healthy, it's 'your fault' you're sick- like you can be cured if only you'd follow the food pyramid! Good luck!

For the past several weeks, every Wednesday I start to feel really bad. I've missed at least part of either Wednesday or Thursday every week at work because of this, and I can't keep doing that. It's like I'm just crashing- Monday and Tuesday I'm okay, in part because I've probably been in bed for a good half the weekend, but by Wednesday, it's like my body just rebels. I lie in bed, with the world spinning at my smallest move, alternatingly too cold and too hot, heart racing, weak, and tired. Then when I finally make it to work, I'm still exhausted and dizzy and all I want to do is lie down. Every week when I feel okay on Tuesday, I think 'alright, so I'm better.' But then I'm not when I wake up. After spending most of Wednesday in bed, if I'm very good and very careful and keep hydrated and load up on sodium, I can struggle through until Friday night when I can sleep for 12 hours. I know that there's not a magic cure or anything and that I'll feel a certain amount of icky just anyways. But how can I avoid these weekly crashes? Thanks!

I do those thermacare warmer thingys. They're meant to go on your back and stuff, but they'll wrap around your feet too. I like them because they stick to your feet and you can put socks over them- if you're careful, you can even walk around like that. So you're not as confined as with a regular heating pad.

Good luck Melissa! I'm praying for you. While I don't actually *know* you, your posts reveal somebody with such a fabulous spirit and grace. I can't imagine what you're going through, and I don't know how you're doing it- but I do know that, in the process of living your life, you're setting a great example and giving the rest of us hope! It's proof that angels can swim as well as fly.

I really like Lexapro...as a matter of fact, DH switched from Zoloft to Lexapro after I started taking it b/c my side effects were so much less then those on Zoloft, which were causing him major irratibility (trust me on that one). And I lost weight the first few weeks too! Just start out small and give it time to work. Good luck!

Oh no! I hope you feel better, Amy. We've got to stop doing this girls (and guys)! No more sepsis in 2007!

I'm sorry you're feeling bad- I feel guilty enough when I can't take my puppy for a walk- I know kids are a lot more demanding. But, from working in childcare, I'll say that, like my dog, they'll get all they need with you laying on the couch and throwing a toy (or whatever the human equivalent is) so long as they know you love them- and it will make the walks all the more special. And the MVP/Autonomic Disorders Center in B'ham is great. Highly recommend them!

I'm a Bama Girl too! (Montgomery) Anyway, I often get the aura. Starts out with a sudden wave of fatigue, then my eyes go a bit blurry and brain slows down, then the tachy comes. Normally happens mid afternoon (like while I'm typing right now) the day before what's probably going to be a bad day. If I'm smart and rest and drink fluid and salt, I can make it to where it doesn't get much worse. If I keep pushing through the day, I'll feel better by evening, but will crash at night and stay crashed for most of the next day. Course I generally tell myself I'm just fine and it's probably just sinuses or something and so there's no need to rest. (denial is not just a river in Egypt after all).

As a cylical (sp?) poster, I hadn't heard about this latest round. I hope you get better- I just said a prayer for you (the dash represents the prayer).

If I drink too much of it, then I'll get dizzy, which makes me nauseus. But I do probably drink a couple glass of wine once or twice a week, either socially or occasionally, if I have time and feel up to the heat, I'll get in the bath with a glass and a book (oh luxury). If I feel bad, going out is not a good idea, but that's more because of the noise and standing then the drink itself, though it does contribute. I drink only white wines (reisling or pinot grigio), champagne/sparkling wine, or vodka. Not a snob- just beer, whiskey, tequila, etc. all make me feel AWFUL, even if I just have one. But my main problem with going out isn't drinking, as I've always enjoyed a few glasses, but never liked being drunk. My problem is the atmosphere of the place- noise, light, people, etc. Or if I'm feeling good and having a good time, I have a hard time making myself go home. (Though I suspect that's really pretty common). Other stuff people have mentioned- HYDRATE before, during, and after the party. Salty snacks are also key.

Let me say that I do understand you totally. I've been at that point (and I'm sure that despite my best efforts at acceptance, will be again) where you just want to scream at people to close the door, leave you alone, and let you sleep. It's incomprehensible sometimes that we're expected to deal with all the daily crap you have to do, PLUS this disease. Like when somebody says they're tired because they were out really late last night and you're thinking to yourself 'yeah, try being exhausted beyond all reckoning because you went to the grocery store, Miss Party Girl.' And so I'm not trying to lecture you at all. But the thing I've found is that friends can really help ground you in the 'normal' world- if I'm stuck at home too long, I start dissolving into the world of sickness that makes me feel worse. Give them a chance to actually help you- you may find that they're true friends who are happy to do it and really take the burden off you and your family. Or, sadly they may not be- in which case they're not worth your energy. Good luck with finding it out!

Maybe a better way to phrase this would be to express your physical limitations and work to figure out ways you can be there for each other without it being too taxing. Emails instead of calls, for example, may be less stressful. But it's honestly not okay to ask your friends not to "expect anything in return" from you for all their help. They're your friends- not your slaves- and they do have a right to expect at least a cheerful 'thank you' upon return of your son, and a sympathetic ear- even if you have to take a nap in the middle of the conversation. The thing is that I'm worried about the misanthropic attitude expressed by your post. People need to receive and give emotional support to be spirtually healthy. It's natural to need alone time, but carrying it out too far results in isolation and depression, which will only make you feel worse. Now, if your friends are just flat-out not understanding your needs, then there's not much you can do about it besides try to sever ties with them and find new friends. And maybe it's time to drop any energy-sapping mere acquantances you have. But you do have a responsibility both to your true friends and to your own mental health to try to make those relationships that you cherish the most work.

So I fell down the stairs Tuesday night, as is inevitable, and broke (I think) my tailbone. I'm going to the Dr. today about it- I was trying to tough it out w/some darvocet at night and Aleve during the day, but I just can't take it any more! It feels like fire emanating from my bottom and shooting up through my spine. (you should I have seen DH try not to laugh when I gave him that mental image!) Here's the thing- I'm allergic to codeine, and the small prescription of darvocet I have left over from an injury of DH doesn't really seem to be helping. Anybody have an idea for a gentle but effective pain killer I can ask for? I'm sort of at a loss.

Yeah for no more hospital! We'll keep praying for you, though!

Hey- I just got back from the MVP/Dysautonomia clinic in B'ham (which I recommend if you're down in 'Bama). Right now I take 25 mg/atenonol at night. He recommended working up to taking an extra one during the day. The medicine has helped with the dizziness, etc., but it makes me sleepy. Now that I'm adjusted to it, it's alright since I take it right before bed. But I already get so tired during the day, that I'm afraid taking it in the morning is going to make that worse. The thing is, of course, if it helps, then it should help the fatigue...eventually. But I just can't decide what to do, and he told me I'd have to make the final decision based on how I was feeling on any particular day. Does anybody else here take atenonol in the morning? How does it affect you? Anybody take an increased dose only on as-needed? Thanks!

You're right, of course. As I said, the only bad press is no press. And wikipedia isn't exactly a DSM when it comes to medicine. That being said, what I think has been tapped into is the frustration we've all felt at times when we're not being taken seriously. And we're the fortunate ones- there are really a lot of people out there with various forms of dysautonomia- many of whom are probably laboring right now under some misdiagnosis, hoping for a cure, while their health is getting worse without a known cause. So it's like hey, all of a sudden some mildly famous person has it and *poof* it's named after them. Like it didn't exist before them. Add to that the fact that it's a man seems to be legitimatizing it in a lot of people's eyes, and the whole thing is mildly irritating. So the problem certainly isn't with the Wiggle, and we're all glad if people become educated as a result. That's great- and I'm glad for people who want to know more. The frustration is with the attitude that says something doesn't exist until there's a celebrty backing it. Mind you, I'm not saying that men don't suffer from dysautonomia. But the fact is that men's health problems have historically been regarded as legitimate physical conditions, while women's health problems are often still diagnosed as being some sort of nervous issue. I hope all of this makes sense.

As Charlie Brown would say..."Good Grief." So those of us who have been suffering before are chopped liver? Plus, I know the wiggles are big, but they're hardly the Beatles. And he's not even really known by anybody but hard-core Wiggles fans by name, like Lou Gehrig or something. Although I suppose it's a double-edged sword...the only bad press is no press, after all.

That's the one. She said the first thing she did after the diagnosis was call him. It didn't say, but I hope she cursed him out.

Hey- Though I'd let ya'll know that last night on Mystery Diagnosis, which is on discovery health, the second segment was about a girl with MVPS! It chronicled how hard it was for her to get diagnosed, the episodic nature of the disease, how she fainted and was extremly fatigued, etc. DH is normally the one who watches Discovery Health, as I feel sometimes like I'm my own little health channel, but last night I INSISTED I was going to stay up and watch it once I saw the teaser. The episode is 'Like Mother, Like Son' (the first segment is about a little boy with Celiac Disease), and it's supposed to be back on December 17th at 6 p.m. E.T. http://health.discovery.com/tvlistings/epi...amp;channel=DHC. And hey- we're all officially 'mysteries.' The TV said so!

This may belong in the 'You know you have dysautonomia when...' thread, but I thought I'd share it. I was talking to my husband and was like 'and chik-fil-a sandwhiches have 1300 mg of sodium but like 400 calories, while a quarter pounder has 200 less mg of sodum and 200 more calories! Isn't that great- I can eat the chik-fil-a, feel better, and not be such a pig! Yeah!' He, meanwhile, looked at me and said '1300 grams of sodium! That's awful!' Kind of shows you how skewed your priorities get- at least all of us are messed up togather! LOL. Seriously though, there's a chik-fil-a express in the bottom of our building that I end up eating a lot, ESPECIALLY when I don't feel good enough to make the trek home for lunch. And I noticed that I do tend to feel better after eating there- this is probably why.

This thread inspired me to do a little bit of research on some things I eat a lot. For fast food, Chik-fil-a is great for high on sodium and relatively low in calories/fat. Plus they're really really really yummy.

...When you start making up nick-names for your condition so that strangers in a grocery line would think that somebody name 'dessy' (short for dysautonomia) has assaulted you when you blame your bruises from falls on them! (Got the idea from my grandmother, who calls her arthristis 'Old Arthur.')