heathmcev

I take 90mg... 60mg morning + 30mg afternoon. It works for me as it's high enough to stop near-syncope but low enough not to upset my GI.

Here's the video clip from the news as well... http://abcnews.go.com/WNT/t/video/astronauts-fainting-spells-lead-breakthrough-15821210

Here's a link to tonight's article on POTS on ABC News. http://abcnews.go.co...comment-1047452 I was so excited to hear we got national publicity - then so mad that it was focused on small hearts when I know for so many of us it's just not true. I wrote a comment at the bottom of the story at the link about... You can write one too and share your thoughts with the author. The more of us that comment, the more likely a follow up story will be! I feel like the world was mislead about our illness...

Naomi, I took a car ride from DE to GA last May with POTS. I only drove in short shifts as I found I got worn out very quickly and would start feeling drowsy. Let my other family members do most of the driving while I sat in the front passenger seat. My biggest dificulty was overstimulation which exacerbated the dizziness I get from too much movement around me. Hopefully you don't have this issue, in which case staying hydrated is probably the biggest thing. It's easier if your family understands there may be a lot of pit stops!! It may also be good to think about the train. You can get a sleeper car and lie down, or recline in a seat. If you want your car in FL the auto train is great. My parents just took it last week. It goes from Virginia to Orlando... so you'd only have to get yourself south of DC... Hope you decide to go!! Even if you can't do all of the activities you'd like once in FL, you'd see your family and feel SO proud of yourself for accomplishing the trip!! One more thing... even if you don't end up needing it, plan on resting the first day you arrive in FL. I found once I got to GA I was more tired than expected from the journey... but 1 afternoon in bed and I was able to be up and enjoying myself!

I'm thinking in my case it's med-related. Since I've been on prednisone it's been coming out like crazy... hoping my Dr can switch me to something else before I go bald

You have been through a lot! I have Central Adrenal Insufficiency in addition to POTS. My endocrinologist works closely with my neuro/POTS specialist and they have found that a percetage of their POTS patients do have hypopituitary issues. I'm on low dose prednisone but it's not hugely helpful at the end of the day. Definitely doesn't help my POTS symptoms and I'm exhausted all the time. I don't know how the 2 are related and the Drs just say medicine hasn't caught up yet (how sick are we of hearing that!) Wish I had more answers.

I did it with no problems.

Dr Mercola has been on this as well in his newsletter. I don't have the link but if you google him it'll be on his site - he has a lot of info on exactly what will happen if this goes thru. I already emailed my reps using Dr Mercola's form letter and got canned letters back saying I should write the FDA. I don't think they (my reps) are even aware of how bad this could be. I hope everyone calls & writes - it was public outcry that squashed this in 1994 - we have to do the same this time!

I also have swollen lymph nodes all over my body. I did have surgery a few yrs ago to remove a lump from my left axilla but luckily it was just a lipoma. the surgeon said some people have a lot of swollen nodes that are fine, but I've suspected that somehow it's connected to pots - I just can't find anyone who knows enough about it to corroborate my theory! Anyone out there know why this could be? I hope you can find some answers and it turns out to be nothing! Please keep us posted...

I just finally got topamax out of my body. I was on it for 3 months - the last if which was spent gradually decreasing the dose to wean off. The whole time I had severe nausea, zero appetite (lost 12 lbs!) and at the highest dose I reached (75 mg) couldn't get out of bed & felt really shaky. I also thought it was a bad pots crash until I realized that instead of slowly getting better with bed rest I was getting worse daily. I then saw that this trend had occurred since I'd last up'd my dose. Then I started getting itchy all over - a sure sign of a drug reaction. So I immediately started weaning off. The exhaustion improved within a week of being on a lower dose. Just a warning if you're nauseous - that didn't stop for me until I'd been off the med completely for a month! My doc said I'm a slow metabolizer tho - so I'm sure most people don't have that long a wait to feel better. I finally got my appetite back last week! Feel better soon! You'll know it was the topamax pretty quickly if you start to lower you're dose and feel better in a week or 2...

I totally echo sue's feeling drunk! There's lots of bumping into walls when I first get up. Lol. In addition to water, moving slow, etc - I try to do gentle stretches lying flat in bed since just waking up is hard let alone being able to stand. Especially stretches involving twisting the torso seem to wake up my spine and get my body into a better state. Every little thing helps.

I've learned to slow down and breathe!! I had *endless* energy before pots & was constantly racing around. Don't think I'd ever have learned to meditate if not for this journey. I'm also more patient with myself & others. And I relate to what kayjay said about her kids being more compassionate for others - I am too now that I know all about what having an "invisible illness" is like. Then there's my family - while most of my friends totally dont get it, I can't believe how much my parents & brother are willing to do to help me! Great thread - and much needed!!!

Dizzysillyak - how did you find out which foods you cant tolerate? Was it through elimination diet or another way?

How about drinking Ensure or a protein shake? Or diuralyte at the very least. I've had a GI thing for weeks that sounds similar (but not from water - think I just caught it & can't shake it) and I've been drinking an Ensure every day to try to get nutrients. I'm the same food-wise... My body doesn't want anything but toast & crackers. Feel your pain :/

Fascinating. My lawyer said sensitivity to meds was important - obviously true! Thanks a lot for your advice maggie

That's good news. I just got my denial in the mail this week from my 2nd adjudicator, so I'm headed the way of the hearing so glad to hear that stage worked for you (after I'm sure a long wait). If you dont mind sharing, what do you think worked in your favor? Pm me if you'd rather... I'm just looking for advice...

Good luck tomorrow - I see him too. The first appt is a lot of info - mostly him taking your history. Be sure to have your questions written and ready to go - he moves fast! Keep us posted.

corina that's so wonderful that it's made such a huge improvement in your quality of life. I love that you pushed until you got the treatment you felt you needed to try - and ended up being right!!

I would like to know what qualifies one POTS patient for this med vs another. Corina - what else do you know about it? Clearly the young woman in the article was bed & wheel chair bound for quite some time. It's pretty exciting that she has found a new lease on life!!

http://www.dailymail.co.uk/health/article-2007276/Fainting-fits-Student-22-collapsed-time-stood-finally-standing-tall.html

Way to go Todd -- I agree with you completely!! And Yogini - I want to sign that email petition to stop calling it the Grinch Syndrome!!!! We are looking for awareness, and to educate our doctors and families - not for POTS to be hijacked by one doctor trying to promote his own agenda. There. That's my speech

So many of us deal with this - but what do you all do to help when it happens?

Me too - and on days when I feel especially weak (like right now) my hands feel a teensy bit shaky too. But I did too much today... which was barely anything!

I'm so sorry you had such a scary experience. I have had flights over the past few years with no problems and others with terrible chest pain - like I'm having a heart attack and my chest is about to explode. I try my best in those situations to say to myself it's "just POTS" like its no biggie (in my most confident inner voice!) and do calming breathing techniques... listen to classical music, etc. I will also add, with regard to the heart monitor - they have an awful time around electrical equipment. Mine is totally wacky in the car, so while I have absolutely NO doubt that your HR was all over the place and not as it should be, the readings may not have been accurate either on the plane with all that interference. If you can handle the rigor of travel in and of itself - go for it!! I miss all of the travel I used to do when I lived overseas. And talk to a cardiologist about meds for the tachycardia maybe??