jesse1919

your picture is still missing so I guess you didn't figure it out yet? To make a smaller pic there are a few ways to do it. this I think is easy (for me) but it's not intuitive because you are not actually going to e-mail it. find the picture on your computer you want to use and double click (or single if you have it set that way) to open it. It "should" open in Windows photo viewer. (If not you can right click the pic and select 'open with' Windows photo viewer) Click E-mail select picture size: smaller click attach MS Outlook "should" open The smaller version of the file you want is in the Attach... line. Right click that file and click "save as" and save it where you want it, just remember where it went! the desktop is fine. Close Outlook and photo viewer. Then come back here to your profile and upload the new smaller file like you tried to do before. Hope that helps.

In conclusion, the symptoms of POTS are phenomenologically different and clinically distinguishable from panic disorder symptoms well, duh!

I've been on Midodrine for years. I felt sort of flushed and nauseous for the first few days and whenever I increased the dose. I did not have serious headaches. If anything it helped the "normal" headaches get better. I started at 5mg/ day and I could tell in 1 week that it was helping. I found that every few months I needed to increase the dose- got a tolerance. Now I'm at 10 mg, 3x/day which is the max recommended dose. I have mild itchy scalp and some difficulty urinating. jrleh- unfortunately there's no exact equation based on physics that a doctor can use to determine how much you "should" take. bp/ hr are an indication it's working or not but really it's trial and error based on how you feel. mcblonde - vertigo is terrible! I had it going off another Rx but never from Midodrine. Jeng - I recall the recommendation was 30 mg per day max. That's why I'm not taking more. So it seems you're at double the recommended limit. I'm not sure what they base the recommendation on. Having POTS and concussions isn't recommended either right. sarahm - I think a month is long enough. It either doesn't work for you or you're not taking enough.

I'm on Midodrine and it did make me feel sort of nauseous at first. It took several days to get used to it. But it didn't feel like death... it was only medium crummy. I could tell it was working within a couple days though. Persistent side effects are some mild intestine upset/ gas, especially after the first dose of the day like you said... but not "exploding". Dry itchy scalp. Some difficulty urinating. The way I see it, it stimulates your body like you were cold. Everything constricts- arteries, gut, bladder, everything. And hair stands up. I got a tolerance to it slowly over 3 years and I kept increasing the dose every few months. I've been at 3x10 mg for about 3 years now. That's the max recommended dose and I don't want to go any higher. It still helps, maybe 50% improvement. The only other med I tried was Toporol beta-blocker and it just made my fatigue worse. Caffeine does seem to help a bit.

Tool! I understand ;-) So yeah seriously earplugs - even for 'normal' people. It's stupid loud. You can hear it fine with the earplugs in. Honestly.... everyone will be standing near the stage so you might be looking at people's backs. It's not the type of concert where people are going to sit much. I hope they figured that out when they offered you the seats. The best seats for sitting might be front row balcony. Farther sure but you might actually see more of the whole stage and slightly more chill back there. It's a tough call BUT if you change your mind when you get there you can probably change seats with someone further back - they'll be happy to move up right? If there's an opening band, you might have a good opportunity to swap after that. Good Luck!

I got POTS literally overnight. I was 27. I went to a Superbowl party on Sun. and just felt like garbage Mon. morning. I didn't get up until after noon. I assumed it was a bug- everyone sharing food etc. But after a couple days I realized this was different... It's been almost 7 years.

I got the White Stripes - Elephant CD for Christmas and Little Acorns and Girl, You Have No Faith in Medicine made me think of you guys. That's it. Sorry for the "Twitter" post ;-) Happy New Year

Thanks for posting. I put it on facebook. Maybe someone will read it. I can't believe acupuncture helped. Any sort of pain sets off my POTS.

Yeah you have virus/ malware. McAfee is OK but it won't catch everything. When did you update it? I really like Malwarebytes. For junk you get from the web, I think it works better than a normal antivirus program. Just google it and download the free version. Then I would disconnect the internet (like unplug your router) in case the virus is uploading your files or recording keystrokes or something. Then run MWB, reboot, then run it again. If it's nasty you might have to start windows in safe mode and then run mwb. If both MWB and McAfee say you're clean it's OK to try the internet again. Hate to say this but viruses are bad and often get worse when you try to delete them. You should back up your valuable files now. Just make sure you scan them again from whatever computer you put them on. Good Luck!

Yeah, at least I made it through college before I got POTS. Sorry to be a pessimist but it's awful to use a particular BPM increase to define POTS regardless of age. They just don't understand it well enough to come up with a better definition. It just seems like more statistics nonsense without real understanding of the underlying physics.

A story related to living with chronic illness http://www.thepostgame.com/commentary/201105/nba-announcer-chris-carrino-battles-fshd-muscular-dystrophy

I'm able to work full time. Mostly I'm sitting, not a very physically demanding job. Although it's stressful at times. I sleep about 7-10 hours on week days. Friday nights I'm drained and usually pass out early. I usually take a 3 hour late afternoon nap Sat and/ or Sun. and sleep about 9-11 hours at night. I leave the apt about 1/2 the weekends depending on how I'm feeling. Maybe go for a walk. Do some laundry. Often think about going shopping but rarely go. Mostly sitting in front of the computer.

Well, I'm male and often get hot flashes in the evening - like now actually. Not every day though. It's mostly my head, ears, upper torso. But my heart doesn't race. It's like my vasoconstriction suddenly gets a stronger. Also my fatigue tends to be reduced a bit after this happens. The veins in my hands usually are deflated completely but when this happens they look puffy. Just another weirdness of POTS I suppose.

Yes my vision gets blurry when I'm very tired. I know I can't drive for more than 2 hours typically because of this. My eyes also hurt and get a burning feeling behind them and usually get a headache too. I know I do need new glasses but that takes energy too.

I usually have a mild/ moderate headache but that's it. No other pain. Just major fatigue. (Except for foot pain from plantar fasciitus but that's something new and I'm not sure if it has anything to do with POTS.)

Well, it's not normal but don't get carried away. Any doc that sees a kid that feels like garbage and has a 128 pulse simply by standing should take it seriously. But you don't start with a TTT. They should do an ECG. Most offices have them. And then standard blood test (make sure they lie her flat not sitting), urine, listen carefully to her heart, maybe chest X-ray. THEN depending on what those show you can move on to a cardiologist who should do an echocardiogram and THEN a TTT. Yes she technically meets the 30 bpm rise definition of POTS and this is abnormal even for kids, but you need to go one step at a time. Take care.

I think the link between mental health and physical health is stronger in people with dysautonomia. I immediately felt better after I got diagnosed because I wasn't worrying as much. It's positive feedback that leads to a downward spiral. worry > feel worse> worry more> feel worse ....

Sorry I'm picky but that BMI must be a typo right? 15 maybe?

140... one flight of stairs would do it easily. I remember one episode. I figured it out before House said it! Pheochromocytoma

Hi. I couldn't vote. It said I need to answer every question. I don't have any of the issues listed in the second question. There needs to be a "none of the above" option.

I'm an engineer at a big company. I got POTS overnight a year out of school. I was out of work 3 months until I got diagnosed. Luckily I didn't get fired. Then part time a few months until I started Midodrine. I've been full time 5 years now. I'm a zombie in my free time. Many weekends I don't leave the apartment and sometimes (like today) I have to say "thanks but I'm not going to make it" to my friends. My sleep is erratic and I ususally don't feel well in the morning (for 8 hours after I wake up) so I get in at 10, 11, 12 and we don't officially have flexible hours. So I get reminded of this occasionally. It's 5AM now, ugg. I'm not as productive as I used to be, just a little slower at everything. BUT I'm working, I have insurance and I'm doing well financially at least. Still I wish I could work less hours and try to have more fun. I hear people say all they do is work. They have NO idea.

I'm interested in this "exclusively female" statement. It would only take one exception to prove this hypothesis wrong and statistics aren't proof. I doubt the male sample size for the study was very large. I was in a Mayo study and with only 3 males. I'll have to go read the papers. It could be a very important clue. I'm male and not hypovolemic. I guess I'm normal flow but haven't been tested for flow. So I wonder what the difference is between low flow POTS and primary hypovolemia? Are they the same condition? Are there males that are hypovolemic? There must be...

Get it from the horse's mouth as they say.... http://www.fda.gov/downloads/Drugs/DrugSafety/ucm089090.pdf "RITALIN? is a central nervous system stimulant prescription medicine. It is used for the treatment of Attention-Deficit Hyperactivity Disorder(ADHD)." That's it, only ADHD. It's an interesting idea though. I tried a beta blocker- definitely bad. So maybe we need the a stimulant or beta agonist?

10! that's huge. 5 is a "typical" resting value.

I saw 3 neighborhood docs who were clueless and then I said enough's enough and we drove there without an appointment. I waited one afternoon to see the triage nurse and saw her the next day. The wait just to see the triage nurse is usually several days and it could be a week or two to see a doctor (at least when I went 4 years ago). Bring a pillow - everyone sleeps in the lobby. I was a little anxious to see the nurse and my pulse was about 130 sitting which was a "good" thing because she sent me to the ER. That got me in to see a GP at the clinic a few days later. The wait isn't as long in the winter - the snowbirds don't make appointments then.