Kate2011

It works wonders for me. :-) But yes, I HATE that warning. It's just scary. :-/

Yes, my whole life. In fact it's my GI history that's making my doctor's think the Dysautonomia has been since birth. I have tons of trigger foods, for me it's actually easier to list the foods I can eat safely, but I won't go into that now. We're worried I may have Gastroparesis so I'm on Reglan (which has helped), and I already have severe stomach pain, GERD, IBS, and what seems to be cyclical vomiting. Good luck and remember you're not alone!

Hey guys, if you're in Florida and looking for a support group, I'm putting one together. Our first meeting will be the 28th of April. Please message me for more information. Thanks, Kate

Hey guys! Is anyone interested in participating in an Orlando, Florida support group? There are 3 of us currently interested. We're thinking of meeting for brunch one sunday morning a month. Anyone interested let me know (either send me your Facebook info or your email address and I'll add you to the list)! Thanks for your time and hope some of you can make it out! Kate

What rolling stool did you get? I'm having trouble finding one tall enough to do anything with. :-/ Someone actually recommended I get a wheelchair to use in the house. Has anyone tried that?

So, odd question but I have a really big problem with daily living skills since my symptoms started acting up again. Laundry, making my bed, and just picking up things on the floor when I straighten my room are especially BIG problems for me. The bending, sorting, standing, folding, moving from washer to dryer (especially) all cause some really serious lightheadedness and near fainting symptoms (I loose my vision mostly - it just tunnels to dark and I get really off balance). I don't usually pass out, but it's not out of the question either. Does anyone else have these issues? What do you do to cope with them? Do you have a method that helps at all? I'm willing to try anything at this point. :-/ Kate

This is scary similar to my situation! Down to the whole brother issue! I have a brother and experienced similar things. Someone needs to develop a dysautonomia dating website! lol. Oh God no! I'm single and in my 20's so I completely understand needing someone to understand but can you imagine how difficult life would be if our spouses had the same issues? I don't think I could cope with that. lol. I can barely take psuedo-care of myself. I can't imagine wanting to to take care of someone else too. And with the same issues...we'd always be getting sick at similar times and possibly getting each other sick if his immune system is as crappy as mine... It's a nice idea but I don't think I could do it with another Dysautonomia patient. :-/

For me it depends on the year. I'm 5'10 and have always been around 170lbs (except when I got to college and gained some weight pre-dysautonomia. When my symptoms spiked in college I went from 180 to 145 in like 2 months. Then a year later I had massive weight gain (145 to 232 in like 6 months). Now, I'm seeing a weight loss trend again. Last month I was 230, now I'm 210. Idk if it will continue yet, but we'll see. I don't need the extra weight (i never had it before anyway), so I'm not too worried but i'm def keeping tabs on it. I seem to either gain or loose drastically when symptoms worsen. I haven't noticed too much change in between bursts when my symptoms are more manageable.

Hey guys, Just wanted to share a link to an organization I discovered recently. I've found them to be a really great resource and it makes explaining the whole Dysautonomia thing easier to other people. :-) So often, it's hard for people to understand the far reaching effects of this condition. But anyway, it's not Dysautonomia specific, but it's a great resource! http://www.invisibledisabilities.org

I have really odd vision too and sometimes I have issues like this. We actually found out that because of the Dysautonomia I developed Diplopia (double vision) and that the flicker was my eyes refocusing. I wear glasses now that help a bit but there's really not much they can do for it. I still have 20/20 vision so the eye doctor didn't catch it during regular exams. There's a special test they do to see if that's the cause. If the computer's the problem though you should invest in some anti-glare glasses. They really help (as I used to work almost exclusively on a computer for hours on end I can tell ya, it makes a big difference!) But definitely look into the Diplopia. A good thing to try is unfocusing your eyes while looking at something, if it splits in 2 you've prob. got double vision. Mine normally doesn't split unless I'm having a particularly bad day or I'm really exhausted. Otherwise things just look a little grainy and when I go from looking up close to far away it takes my eyes a minute to adjust to the change. Good luck!

I actually don't mind it. I don't know what happens with my body but I also fall asleep (like dead asleep). It's kind of weird. I get the same kind of drugged sleep feeling when I'm having a really bad episode, but it's definitely not a normal sleep is my point. I don't mind it too much though because I always wake back up and after a day of resting I'm usually good to know. It doesn't usually trigger anything else. (I definitely need that day of resting afterwards though.) Added bonus, I've never had to sit through a whole flight! :-) They always seem to be over in like half an hour no matter how far I'm flying. (I've found that I don't do well on layovers unless I'm with someone though, because I'll fall asleep and miss my next plane. (Last time I flew I just sat at the gate and told the flight attendant in charge of boarding though and she woke me up.) Hope this helps! Enjoy your trip!

Hey again guys, I just had it recommended to me that I get a service dog through a local non-profit. Does anyone have any experience with service dogs? They said they can train the dog to call a programmed number (911/neighbor/whoever) with a doggie button if you pass out, wake you up in the morning, prompt you to exercise, sit with you after you pass out, recognize triggers and help reduce stress that can increase symptoms, even bring you the phone or other objects if you're really having a down day. I thought it was a pretty impressive demo :-) I'm seriously considering it, if anyone has any experience I'd love to hear it. Also, the owner of the non-profit asked me to try to think of some other things that could be useful. Any ideas? Thanks, Kate

Ya, IDK, I've been on 60mg of Sudafed for about a month now (Dr. prescribed) and I do feel better, obviously I still have episodes but they seem to be milder. But then again I don't have a POTS diagnosis, I have Dysautonomia without any other description as far as I know. (I have exercise and orthostatic intolerance as well as a plethora of other symptoms but idk what they add up to exactly, so far though I've never have any problems with tachycardia that I know of. I actually got the idea because I spoke to woman who's on Ephedrine for her Dysautonomia. My HR IS pretty high on it, but I've been feeling better, it's weird, I haven't felt this good in years. From what I understand it's a vasoconstrictor? So, that may be why it helps. Here's the info I found on it though: http://www.dinet.org/what_helps.htm (under vasoconstrictors); http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm (under treatment); It's all really vague information, that's why I was so interested on others with experience with ephedrine.

I had a potassium problem when I was on florinef (i was technically on fludrocortisone but it's the same thing). I only started experiencing a problem after my dose was raised to dangerous levels though, the cardiologist I saw kept upping my meds to reduce my symptoms until I was taking about 6 times the recommended dose. (He then told me that if that high a dose didn't fix my problem I must have Munchousens.) It took going back to my PC to get a blood test that revealed that my potassium levels had dropped dangerously low. We added potassium supplements, but fludrocortisone never seemed to work for me so eventually I stopped taking it. (My PC and I decided to try to keep me on it to see if once my potassium levels stabilized I would have some improvement. The symptoms I experienced with the potassium deficiency were very similar to my dysautonomia symptoms so we could never really tell why I was feeling so awful.)

I've had 2 experiences like that. Once, I went in to see a Dr. once and he actually insisted I fill out an anxiety checklist before he would let me leave the office. The second time I was in with my old cardiologist (who had upped my fludrocortisone to 6 pills a day to try to get rid of my symptoms) and things were just getting worse. I was in yet again telling him this and he told me I had Munchousens and I needed psychiatric help. I went to see my PC who did a blood test and it turns out my potassium had bottomed out because of the high dosage of fludrocotisone. It was one of the most maddening experiences of my life. I can definitely relate. I wish more people knew about Dysautonomia, I feel like a lot of the responses are out of ignorance. :-/

Hey guys, Just wondering if anyone here is on Ephedrine. I'm going to see my cardiologist in March to see if it'll be a viable option for me (I read about it being a possible treatment for Dysautonomia), and I just wanted to know if anybody has any experience with it. My symptoms have been getting much worse recently and I need to try something new. My PC put me on Sudafed in the meantime to see if I see any positive changes and I am finding that I have more energy. I'm wondering about the side effects too though. I've been having trouble sleeping the past week or so (I've only been on the Sudafed for about a month) and idk if that's just something with the Dysautonomia or if that's a possible side effect. IDK, but I'd love input. Have anyone seen improvements after taking Ephedrine? Has anybody found another med that's worked well for them? P.S. I've already tried Fludrocortisone and Midodrine with no positive results.

I just tried having a half glass of wine last week. I feel asleep very soon after and woke up with the worst hangover I could have imagined. It wasn't worth it in my opinion. But hey you can always try and just go from there.

Thanks for the advice, guys. Just to clear some details up I didn't actually test positive for celiac I just tried gluten free because my doctor said I may still be sensitive to gluten. Also, I know I'm sensitive to certain types of dairy, but not all cheeses bug me (I do tend to drink kifer dairy free stuff and dairy free milks like silk brands though because milks really bothers me). Also, I'm not a vegetarian, but at the moment the thought of meat is making me sick to my stomach...I'm not really sure why to be honest. This has started happening with other foods too (they literally make me grimace and feel queazy). It's such a weird thing to me, I normally am quite a little foody, but in the last few weeks nothing sounds remotely appealing to me. I can't even take smells at this point.

Hey guys, just looking for some advice. My symptoms have skyrocketed all of the sudden. Nausea being the worst. I'm still gluten free but lately almost everything is making me sick to my stomach. I seem to only be able to stomach one small snack at a time. For example I had a couple slices of cheese for this morning, then a few hours later I had a handful of carrots, 3 or 4 hours later I had a few tablespoons of peanut butter. That was fine, the problem comes when I eat almost anything else. Like, tonight I had a little serving of mashed potatoes, a few cooked carrots, and some plain green beans and I was vomiting an hour later. (Happy Thanksgiving, right?) Has anyone had experience with nausea like this? It's been about 2 weeks and I'm not sure what to do...

I don't have the same issues as you do in the kitchen but have you tried kind of snacking all day and not making full meals? My nausea is so bad right now that I can't stomach real meals so I tend to have a couple pieces of cheese, a few hours later have some carrots, a few hours later have some peanut butter... you know? Like I said totally different problem but maybe on bad days just avoid cooking. Good luck!

I'm not sure if this was just a precaution but my doctor told me to keep eating normally until I had the blood work done (mine came back negative for celiac anyway but he thinks it may still be a sensitivity)

Thanks for this. :-)

I just started looking into what it would take to get a service dog here in Florida, so far I haven't heard back but I plan on talking to my cardiologist on Friday when I see him. I'll update you guys if I get any information on it that's helpful. I can definitely see where it would be a help to have a service dog, especially considering the loneliness, isolation, and really the depression that can come along with this issue. I find that kills my will some days and I often think that having a service animal would be a help even if it were just for the emotional support.

Wow, ya I never kept mine in the fridge either...

My symptoms may not all be from Dysautonomia so keep that in mind too... I'm not exactly sure where Dysautonomia stops and other things start. My main symptoms are: Extreme Fatigue Lightheadedness Low BP Severe IBS - constipation Severe Acid Reflux or GERD depending on who you talk to Low Body Temperature Always feeling really cold (possibly the low temperature but idk) Tingly Limbs "Sleepy" Limbs (My limbs fall asleep really easily and stay asleep for long periods of time) Balance Problems (especially in the shower...I'm thinking the heat maybe?) Trouble Breathing Anxiety (I don't like people getting close to me when I'm having bad days, it gives me these little anxiety attacks) Brain Fog Aches in my muscles (especially in my neck) Depression and Isolation (I'd say these are my worst enemies some days...like today) Double Vision Lack of Motivation Severe and multiple drug allergies Cold Urticaria (allergy to cold) flushing exercise intolerance gluten intolerance possible dairy intolerance