joiedevivre516

I definitely have twitching - sometimes it's totally random and other times it gets really bad right before I have a seizure or pass out - I've come to like it because it's my little warning sign so that I can get somewhere safe!

Heya Amber! Salt does help migraines quite a lot - I used to know why and it's somethihng about blood pressure and blood vessel constriction, but I honestly can't remember now! Dark chocolate and caffeine also help! I'm on Imitrex and Amerge (depending on the type of migraine) for them, and I've been getting them since I was 9. Nothing's EVER made me migraine free, including beta blockers, but chocolate, caffeine, salt, and the Imitrex and Amerge do help! Good luck!!

I've actually been on Tramadol, Vicodin, Tylenol 3 and a few other RX painkillers and the Tramadol definitely helped but had NO side effects, whereas the Vicodin and the Tylenol 3 absolutely KILLED me with side effects! They put those warnings on the Ultram/Tramadol because there's a VERY small population that has trouble, but we're talking like a miniscule portion, and for the most part I think the side effects even for them are quite mild. I hope this helps! I warn you, the Tramadol isn't as strong as the others, but it definitely made a dent for me at least! Good luck!

I'm sorry you're having trouble! I think one thing it's important to remember is that sometimes doctors have to implement policies that are hard for their patients to understand because of their own legal or professional problems. I know of doctors offices who have encountered major trouble in dealing with SSDI claims. It's awful that you weren't told about this until today, though - I hope everything goes really well with your lawyer and your case! I've encountered so many negative doctors that it's become such a treat to just find someone who's warm, like you say Dr. Grubb is! Hopefully he can work out the staff situation!

Hi! I think everyone's having health problems right now - I definitely have a major virus or something; my temp's way up and I'm feeling rather destroyed physically. I've had POTS my whole life, so I can never tell whether it takes me longer to recover now or what - I've always been very, very slow at healing. Like you, I get tachycardic and have buckets of "skipped beats" and palpitations. My blood pressure is also super low (although it usually is pretty low, even WITH the meds), so add that to the aspects of the virus and I'm one unhappy camper. My main worry is that I'm having increasing trouble drinking, and I DON'T want to end up in the hospital like I usually do with these viruses. For right now I'm just trying to look at this as a nice chance to catch up on some movies and some reading... Hopefully that's all it WILL be! I hope you feel much, much better soon. Sometimes one thing that helps me with nausea, headaches, or dizziness is peppermint extract; I have no idea why. Good luck!

I have trouble with this, too, although more often when I take naps than when I'm asleep at night, but it happens then, too! Good luck!

I have that several times a week, I'd say, and it used to terrify me and drive me crazy. Finally I realized that if I just give into it and let it feel like a rocking boat and rock me to sleep, it turns into an ok thing. I know that's stupid, it just seemed to help. Of course I sail, so that motion really IS comforting to me - after a while I had trouble sleeping without it, so I would have to visualize being on a rocking boat to get to sleep! Good luck!

Hi! I think when I voted for that I was thinking of some kind of mailing list program for doctors, so that the doctors we see can stay informed about Dysautonomia without their patients just shoving it down their throats - I think that makes it seem a little less professional. I was also thinking of having some kind of medical presence along with DINET, and maybe that way, when doctors go to conferences and the like (you know, about new medical findings), there can be some sort of presence representing Dysautonomia so that physicians KNOW about it and will be better able to diagnose people and realize when what they're seeing is Dysaut. I hope this helps, and thanks for doing this poll!

I think fainting for us can happen any time we get up, especially after being supine or asleep. It's happened to me in the middle of the night, first thing and the morning, and pretty much every other time of day, so I think it has more to do with what you're doing and what you've been doing than the time of day. Good luck!

Hey, Amber I've had low Potassium levels for years, and when I was in the hospital two years ago my doc prescribed it for me. I'm allergic to bananas and a few other potassium-rich foods, so I have to use a supplement. Even with the supplement we've never been able to get my Potassium levels where they need to be, so eventually I had to start getting it in IV form, which makes it easier for my body to process. My doc told me the reason a lot of us are low in Potassium and other nutrients is because our bodies can't process the nutrients out of food - it's one of the reasons we need so much liquid and get dehydrated so easily. Good luck! Just make sure you talk to a doctor about it, or just use a very modest amount!

I think one of the most important things with dysaut. is to stay positive. All of the symptoms you mentioned are hallmarks of dysaut., including the fatigue. That doesn't necessarily mean you have CFS along with your primary form of dysaut. Sometimes it improves, sometimes it doesn't - I have a form that I've had all my life and that probably won't ever really improve. However, I take comfort in the fact that it all could be so much worse - it's rare for people do die from dysaut., and that is such a blessing. At least we all have a chance to do something wonderful with our lives! Good luck, and stay cheerful! I know it's hard - it took me 18.5 years to get a diagnosis, but you just have to find all the beautiful things in your life.

I have a lot of trouble with foot and leg edema when I walk around - my feet and legs will start swelling, get purple, and then I'll start to lose feeling in them, so even if I'm not having actual syncope from the POTS itself, I'm falling over because of my legs! Do you ever notice a loss of feeling in your legs or feet? I think the compression hose will definitely help - my doc's having me fitted for special ones because we can't find any that are small enough... Good luck!

When I'm straightening up I get a bunch of boxes/bags and start at one place, like the desk, and take everything that doesn't belong on the desk and put it in the boxes based on where it belongs, and then I go to where it needs to be and put stuff away. This way I can sit down at each separate station and to everything I need to do before moving on. I barely have to stand up or move around at all! It also divides everything in really manageable bits of cleaning, instead of like a giant cleaning spree. I also have a kitchen stool with a back that I use for cleaning and cooking in the kitchen. Hope this helps!

Welcome to DINET!!! I just joined on April 7th, and everyone has been SO great!! I'm sorry you had to find the group, but glad you're here! My name's Kate, and feel free to contact me if you need anything!

Usually POTS itself is not terminal, but the complications can be. Just be careful and stay on top of ALL your health problems, because POTS can cause sort of "off-shoot" problems that can be terminal if you don't take care of them. I think it also depends on the type of POTS - I have hyperadrenergic POTS, and a lot of my friends with this have had much more serious health complications than people with other forms of POTS. If you're careful you should be fine, though!! And don't forget to enjoy what you have! Good luck!

Hey, hon. I totally understand how frustrating and cruel it is when the people you care about the most don't support you the way they should. I wish I could say that getting really sick (surgery, ending up in the hospital) will change that, but it doesn't always. Sometimes people just don't know how to deal with people who are sick or different. If they've never had health problems, they can't see how debilitating they can be unless it's cancer or something of that ilk. I've also found several articles (many by Dr. Grubb) about how horrible POTS can be, and how it can be just as disruptive as Chronic Obstructive Pulmonary Disease and Congestive Heart Failure. Sometimes having your loved ones actually SIT DOWN and read a medical article about ALL of the implications of POTS really helps. If you want, I can email you some links! I KNOW you don't spend all your time talking to "sick people." You've got your Mary Kay job and your friends, and I'm so proud of you for that, and he should be, too! And even if you are primarily friends with people who share your disease, that's not a problem. We're not a completely separate race of people, we just share one trait. We're all completely different in our responses to the disease and our personalities. Just remember how awesome you are - this disease doesn't detract from that AT ALL!! We love you!!

I know that I'm only 18 and that I'm probably too young to know what I'm talking about, but I saw this thread and I had to post. I am SO very sorry about what you are going through - it breaks my heart and terrifies me at the same time. One of the first things I was scared about when I first got sick was the possibility that I wouldn't be able to have children. Of course I'm in college now and I'm not even thinking about starting a family, but, like you, I want to eventually be a mother more than anything else. My mom went through more than five miscarriages and rounds and rounds of fertility treatments before she finally had me - at age 40. I know how much pain she went through, thinking that she wouldn't be able to have a baby, so my heart just aches for you. The very fact that you want a child so much shows what an amazing mother you would be. I hope with ALL of my soul that you CAN have beautiful children, and that everyone else on this forum who wants kids and fears they won't be able to does to. Please let me know if there's anything I can do - I'm very good at moral support. I don't even know how to articulate what I feel at reading this, but I hope you know that it's nothing but empathy and hope. Please don't think that you're sick because of something you did. No one here is a bad person, and yet we're all sick. Sometimes things just happen, and maybe the reason is because that we CAN deal with it, and other people might not be able to. Maybe it's also so that we can become stronger and eventually help other people. I know that sounds trite and that it probably doesn't help, but I just want you to feel better!

Hello! I have EDS, too - and as a result I dislocated my shoulder 3.5 years ago and had surgery and then was in and out of PT for yeaaars. Of course, that was before they figured out that I HAD POTS or EDS. I also have extremely "snappy" tendons - I creak and pop so much when I stand up or move that my mom started calling me her little old lady! I'm not sure WHY this happens, but my doc said that it is related to the EDS and the messed up elasticity or something... I'm horrible with understanding these technical explanations, lol. Good luck! Let me know how you're doing! Kate

Ugh I'm SOOOOO glad to finally be home!! I was up in Rhode Island (we went up on Easter, after ALREADY having to postpone the trip two days) this week, and on Thursday, after going up to New Hampshire to see my baby cousin for the day I ended up in a HORRIBLE POTS hole! I had to go to the ER on Friday (we were supposed to fly home on Saturday), and I was so sick I couldn't leave. We had to stay until Tuesday night, and even then (my dad had already returned home) my mom had to rent a van and it took us two days to make the 6 1/2 hour trip. Yuck! Thanks for letting me rant - I just feel so triumphant having finally gotten home!

I was started on Florinef about 3 weeks ago, and I can't really tell if it's doing anything! I was just in the ER two days ago, though, and my Potassium was ALSO really low, even though I'm already TAKING Potassium supplements! I'm allergic to bananas, so that's out... I guess I'm going to have to take even MORE Potassium!

Joe, how cool! I also have a Steinway bench - it's a BEAUTIFUL adjustable duet bench (each side actually adjusts separately), because at the heigh of my piano I was mainly into ensemble playing. My Steinway (it's a 1928 - personally I think the 1920s Steinways are incomparable!!) came with a solid wood bench, but we immediately upgraded to the artist bench so I could adjust it! Thanks for the awesome advice!! It definitely helps!

While time will probably help with the rest of my family (and my mom's already doing great), I don't really foresee things getting better with my father, no matter what happens. He's been like this since I was born, and has both mental/emotional and substance problems, so until he chooses to get help and deal with that, I don't really think he'll be any better at relating to me or my mom. I've had REALLY serious health issues my whole life - I've been in and out of the hospital, had numerous surgeries, and have been bedridden for periods of time. He's never been able to adjust yet, so despite the fact that I was only just diagnosed this month and have only been actively pursuing a diagnosis of any kind for about 3-4 years, he's had plenty of time to come to terms with my health issues, and never has. I don't really believe that someone with a substance problem CAN relate well to other people, so until he deals with that, I don't really think things will get much better in terms of his relationship with me. I'm afraid I just had to vent! Thanks VERY much to you all for yor input and support! Happy belated Easter!

I have DEFINITELY "lost time" before when my heart rate's up and my BP's down, but I can't say for sure whether that's due to my POTS, because I (previously) had dealt with unrelated PTSD. However, even now that the PTSD has mainly passed, I still have very occasional episodes of "lost time," particularly when I've fainted and just come to. I should probably ask my cardiologist about this!

Hi, Laura! I'm SO sorry you had such a difficult Easter. I'm sure (although I know this is not very much consolation) that your family understand and are just happy you're okay! It seems like there are a lot of important life events/holidays that get stepped on by POTS; this disease is so hard to plan for! I think part of it is that the very act of working hard to get things ready wears us out and makes us even MORE likely to have a difficult time and experience symptoms. I hope that you can watch the tape with your family and have a lovely post-Easter celebration! Maybe your husband could even recreate things for you and the kids? I'm sure the kids would LOVE that - a second egg hunt! And this way, you wouldn't have to do too much - you could even take a lawn chair outside or a chaise and relax but still participate. I hope you feel much, much better, and stay happy! There are a lot of people who care about you!! Kate

Thank you all so much! At this point I'm just glad I can go tomorrow - hopefully things will REALLY work this time. Happy Easter to all of you! Kate