Hope

So happy to see this, can't wait to start sending it out!

Welcome!

Has anybody had any improvement with Hawthorne Berry? I'm thinking of trying it, but I have heard it can make the tachycardia worse in some people. I guess medications are the same way though, working on some people making other people worse. Just wondered, I don't actually know anybody that has used it, just from what I've read.

I am blessed to have found a cardiologist AND primary doc that works with pots (this is a new primary, the one I had before kept telling me I needed better drugs from a psychiatrist.) My cardiologist is actually a partner of one of the docs listed on the physician list provided on this website. I know location is everything though, you can't just drive across 3 states to get to a doc willing to help you. I hope you can find doctors that will help you.

Yes my symptoms do increase around my period (sometimes before, sometimes during, or after), and also when I ovulate. And I can usually account for my chest pain. I have no problem calling my cardologist with ANY questions.

Of course I am not a doctor and I am not giving "Medical Advice", with that said... from what I have read in the past 8 months of my misery, the actual Postural Orthostatic Tachycardia in my course of illness is only a result of other things going on in my body. POTS seems to cause some of its own symptoms, but the bigger picture of dysautonomia seems to cause more symptoms than anything. And what causes the dysautonomia, of course is what everybody is trying to figure out. It also seems to be brought on for different reasons in different people, and reading what everybody has posted here is so helpful in narrowing these things down. What a God send this forum is! To hear what others have gone through or are currently going through and what's been tested for and what treatments have helped or have not helped really helps when comparing them to my own experience. I, like a lot of people here, have a home blood pressure monitor with a heart rate monitor on it. Sometimes my symptoms correlate with the current readings. Other times my monitor readings are within a good range and I still feel symptoms that have just not affected my HR or BP.

Jen, I wish I could help, but I was not given all that you were I plan on giving the long line bra a try that Katie talked about. She sent me a link for one brand but they appear to only go to a size DD. Possibly there are other brands out there on the web to accommodate you though.

The organic food I consume is either from Kroger's organic section, or from my own organic garden. If we had an organic store close by us, I might go.

Rissy, for that last question, I have changed my diet, but I think thats what finally slowed my weight loss. My food is now staying with me, and I think whether or not my blood pressure is low, that my elevated HR burns more calories. Of course, that's just what I'm thinking, I have no medical training.

Ruby T- Glad to hear I'm not the only one with the foam, and I also layer my thin cotton shirts. Everytime I've tried to wear a sweater this winter, I've taken it back off in about 5 minutes =) I think the people around me just think I'm neurotic about this stuff! Naomi-I like that shirt on your Avatar. I think I will be getting a POTS shirt or 2. I am on the band wagon for raising awareness for POTS. Katie- Definitely the bras affect me, hadn't thought about the longer style, I will try that. Thanks gals!

I liked to crochet when I didn't have the energy to do anything else. It made me feel like I was still able to do something. And I could fall asleep doing it without ruining it and wake up and start back at it. =)

I live in the North and of course during the winter nights it can get cold. I have to maintain a good core body heat. Too cold my hands and feet go numb, to hot...well, we all know that makes us feel worse. Maybe a lot of you have had to swear off fleece too, I don't know I haven't seen anything on here about it but if I wear fleece pajamas to bed, even if I don't feel too warm, I wake up feeling incredibly weak! I've tested this theory many times because fleece is very cozy! But I wake up feeling much better when I sleep in light cotton, or flannel. Just thought I would share in case any of you out there are wearing fleece =) Also, I had to ditch my 4" foam topper on my mattress. I had purchased it due to a lower back/hip problem (and it did help that), but I am convinced it made my circulation worse. I made a lot of improvement after taking that off my bed. Has anybody else had to make these kinds of changes? I am kind of new to this still so I am looking around to see what other changes I could make to improve my symptoms.

I don't know how it can be said that this condition is not life-threatening. Had I lived alone without my family to take care of me during what so far has been the worst of it, I wouldn't have been able to feed myself, I couldn't move my body to even get water. Left by myself for too long I can't believe that I wouldn't have dehydrated and starved to death. And I do give all the credit for my recovery to Jesus! After 6 visits to the hospital and countless other doctor appointments with little help, it finally dawned on me that God created me and he was the one to turn to. I pray every day and I am given the insight as to what to do.

Yes, very familiar! My family is always lovingly making fun of me! It hate it most when I am talking to a doctor and I can't speak properly, they look at me like I'm just stupid! Most recently the coordination thing is more noticeable. Probably because I am able to move around more now, but I keep hitting my knuckles on things, hitting my shoulder on the corner of the wall when walking past, I racked my toes this morning on the side of the tub getting out of the shower. But I'll take it as opposed to being bed bound! =) I like the idea that I can finally stand up in the shower, so who cares if I'm getting a couple bruises doing it, ha, ha!

Last time mine were checked they were 425. I was never told what it meant. I didn't even know they were high until I had requested all my records and saw it. I would be interested to know also.

I use Nature Made: No artificial Colors, No Artificial Flavors, No Preservatives, No yeast, No Gluten. At least on the bottles that I have. You may want to check each supplement.

I take Nature Made (gluten free) "Stress B-Complex", helps my chronic fatigue. I take 500mg Vitamin C, helps give my immune system a boost. I drink cherry juice once a day to reduce inflammation. I only take my multivitamin a couple times a week because it has iron in it. I don't digest iron supplements well but I still need the extra iron so that's why I don't take them everyday. I eat a little spinach almost everyday to get my iron in.

I've only had them about 6 times at the hospital when starting at the ER, or in an ambulance. I haven't actually gone anywhere just for an IV yet. Lately I've been doing ok on my own with oral fluids and salt, but I have not lost a lot of fluid either since September. My last IV was the end of October. If I get the flu or something like that I suppose I will need IV fluids.

Currently, I'm just enjoying getting up and taking care of myself. Most recently I've started driving very short distances. I read a lot and use my computer a lot. I just started planning my garden for spring in hopes that I will be able to do the gardening this year. I LOVE to garden! I also love to sew, but I haven't had the energy to put towards it. But I am gradually getting better. All I have to do is look back 2-3 months and it's a dramatic difference. I have high hopes of being close to my normal self this summer!

I was just diagnosed this past year, but I've been dealing with most of the symptoms since I was a teenager at least, if not younger. My mom says that when I was a baby my lips would turn blue, but the doctor couldn't find anything wrong. So it's possible I was just born with it. I was doing much better in my 30's, started going down hill again after 40 and this past year has been my worst which finally brought me to a diagnosis of POTS and actually getting help with it. I don't wish anybody else to be sick, but I am so relieved to find out after all these years that there are other people out there feeling the same way and really understand what it's like!

Does anybody else here take this? Brand name is Sarafem. I don't see on the POTS web page on either "What helps" or "What to avoid". It's an SSRI, but I know they are not all the same. I'm a little gun-shy on taking new meds since I have been given things that have made me considerably worse.

Just a thought, I try to get my extra salt without Nitrates. The nitrates will always make my heart rate increase even with my meds. The only lunchmeat I eat is Hormel Natural Choice Turkey (I eat the turkey I'm not sure if other meats have the same ingredients, you would have to check). Not only is it gluten free but it is nitrate free except what occurs naturally in celery juice powder and I do well with it. I can't eat olives, or pickles, or anything with nitrates. Apple Gate Farms is suppose to have a turkey bacon without nitrates, but I haven't gotten any yet. I do most of my salting with table sea salt, and Regular/original Better Made potato chips are always next to my bed. And like the others have said, I have to control my activity on my good days, or I will pay for it. Also I eat gluten free and dairy free for easier digestion, and I feel it very quickly if I cheat! Then there's the monthly cycle that throws everything off. I don't know how old your daughter is, but if she has a cycle or is even getting close to the age of having one, that could have an impact. I hope she's feeling better again soon!

Luckily I haven't forgotten a face, but i have often forgotten where I am suppose to be driving to and sometimes have to pull over to think about it. Or I have to back track because I finally remember and I have passed my destination. When I was driving more I took to writing a list of places I was going for reference when I forgot where I was suppose to be going. I have joked with my kids that I may not know who they are when I'm 50 and not to take it personally!

I take one in the morning with my Toprol. It does seem to help, but how much seems to vary from day to day as do my POTS symptoms. I know I am worse without it. I can take up to 3 a day according to my prescription but if I take more than the one in the morning it seems to cause more problems than it's worth (headache, headpressure)

Did you try using Gravatar? That's the only way I could get mine up. Even photobucket wouldn't work for me. Definitely not straight from my computer.