potsgirl

I worked in management in retail, and then I did archaeological work near the Grand Canyon for a tribe where I would stand most of my days. I loved that job, but the high heat and standing just weren't possible...I've been out of work for about 3 years now. I really want to go back!

I had to go to the ER twice in 8 days. Did I mention I really, really didn't want to go? The first time was for an excruciating episode of occipital neuralgia where I didn't sleep for days, the second (three days ago) was when I had a seizure in the shower while I was washing my hair and then passed out in the shower. I hit my head pretty hard and was out for awhile. The ER did a CT scan, gave me fluids and pain meds, and took me seriously, so I guess that's a bonus.

klcowley,

There has been a ton of information on Mayo Clinic from the past, so I would recommend doing a search on 'Mayo Clinic' in the upper right hand corner of this page. Rochester, MN is where the group of autonomic specialists are, but we also have a great doctor who specializes in dysautonomia in the M. Clinic in Scottsdale, AZ. How you had any tests done yet, like a tilt table test?

Katherine,

Thanks for finding the stats from the last poll in 2004. I know I should have done a poll - I may still do one to see where the numbers are now, especially since this new theory has come about.

Hello Everyone,

I saw a segment on the Today Show yesterday where they discussed new studies that were finding that people who are left-handed tend to get certain diseases (diabetes, heart problems, etc) more than those who are right-handed. The population in the US is approximately 10% left-handed. I think it would be interesting to see how many of us are lefties. I'm one of them, although I do certain things (eat, throw a ball, bat) right-handed.

Thanks!

Jana

Jangle, you sound like my son!

I was also very active before POTS, working out 4-5 days a week, hiking, etc. Now I'm lucky to do 40 minutes on the treadmill or EFX 3 times a week. Oh, and always ab work!

Way to go, Maggie!

My condolences on the loss of your husband's grandfather. Seabands can work for nausea, as can Dramamine. I've noticed that Benadryl can also help. I drink a lot of water with electrolytes (tablets you drop into your water by Camelbak), try to keep my feet up as much as possible by leaning the car seat back or lying down on the back seat, and try to snack on salty foods during the trip. Get out to stretch (and probably use the restroom with all that water!) along the way, and try to rest as much as possible once you get to Michigan. I hope things go well for you, and please let us know how your trip went. I've done a six-hour trip before, and while difficult, it certainly wasn't impossible. Positive thinking helps!

I wore a Holter monitor that showed my HR was consistently low - in the 30s and 40s. So, I got a pacemaker for my bradycardia. I was so tired out and could hardly walk more than 50 feet or so without becoming completely exhausted. Turned out I had cardiomyopathy (dilated) and congestive heart failure. Everyone is different, but I would check with a cardio and possibly get an echocardiogram to check out your heart function. Perhaps a Holter monitor, too.

Good luck and let us know what you find out!

I couldn't find the pic on your blog, A. What is it under?

Jangle,

Thanks for looking up the stats in that article. I was cyclical at first with my autonomic neuropathy where I had two periods about a year apart that I felt better and could work again, but about 4 years ago I went down again and have stayed there, adding new diagnoses to the mix every so often. I'm ready to have a recovery period and stay there - and get back to work. : )

When I was in my teen years, I sweated like a horse. I had to use that special deodorant, Mitchum (?) or be extremely embarrassed by the stains under my arms on my shirts. Now, I don't seem to sweat at all, even if I'm working out.

I take salt tablets and a multi-vitamin. Am going to try L-Lysine for help with pain. I'm also thinking of taking more B vitamins to see if that helps with energy. I take Viactiv chews (chocolate!) for calcium, because I have early-stage osteoporosis.

Jangle,

What do YOU do?

There are also autonomic specialists at the Mayo Clinic in Scottsdale, AZ, and Rochester, MN. I'm not sure about the Florida location. Don't give up! I called to get in to see Grubb, and his appointments are a year out. Depending on where you live, consider the physicians on the Dinet directory, as Yogini suggested.

Rich and Jangle,

Thanks for posting articles on the prognosis of POTS. Jangle, if you do get the time to review that article in depth, please let us know your findings. I think we're all interesting in recovery rates!

I feel better when I get IV fluids, but I only get them in the ER or hospital. The doctors around here don't seem to believe in it as a treatment tool.

Rich,

Do you use any inhalers? I just to use two of them - one for everyday, one for asthma attacks. They were very helpful. Sorry I can't think of the names of the meds right now.

I also take Paxil (15 mg) to help with my anxiety and the few panic attacks I had many years ago. It has helped me. Perhaps if your doctor approves you could start on a very low dose of an SSRI and see what happen? I only take 10-15 mg of Paxil, which is about half of the usual dosage.

Good luck with whatever you decide!

lgail,

Please don't double your dose without first checking with your doctor! We have to be careful about giving out medical advice in this forum, because we are not doctors and what works for one person may have the opposite effect on others. Also, you do need a high salt intake along with water and electrolytes (Gatorade and other beverages), but again, please check with your doctor because it's not the same for everyone. I have low BP, and I am supposed to be taking 8-10 grams of salt a day.

I would definitely do a tilt table test (the major diagnostic tool for POTS) at home first to see what happens. You want both your BP and your HR. You can find a good cuff with a digital monitor at a drug store or online. You would need to see what your BP and HR were after you've been lying down for 10 minutes, (you can also do sitting, but I usually do the supine and standing readings), then take your readings at 1, 3, 5 and 10 minutes. Mayo Clinic defines POTS as having an increase of at least 30 beats per minute when you stand, with your BP staying pretty constant, usually with no more than a 10-15 point difference. If your HR goes up >30 beats, and your BP drops significantly, you're probably looking at Orthostatic Intolerance/Hypotension. That's what my numbers do, and I have autonomic neuropathy, small fiber neuropathy, and occipital nerve headaches.

I would also suggest a cardiologist, since my problems started out with dilated cardiomyopathy, and some of your problems may be heart-related. My neurologist is the one who does my autonomic testing (including TTT) and also echocardiograms. He caught my blood clot that was in my heart about 9 months ago, but he's an autonomic specialist at the Mayo Clinic in Arizona.

Good luck, and let us know how you're progressing.

Cheers,

Jana

Hmmm, I can't seem to connect to it, and I'd like to know what it says. Somebody help me out with a nutshell explanation?

I spend a lot of my days on the computer, reading, watching some tv shows I record so I can skip through the commercials (yay!), and exercising. I get enjoyment out of all of these things, especially reading. When I'm up to it, I like to go to matinees at the movies. Also, lunch out is an occasional treat. I love to hike, and I live near mountains, but now I can only do easy trails and not hike nearly as far as I'd like to.

I've always also loved Scrabble!

I was told once by a doctor that there was nothing they could do for me if I couldn't take Florinef, and that I would probably be dead in the next couple of years!!

My sleep rhythms are crazy right now. I fall asleep between 6-7:30 pm, and am getting up around 3:30-4:30 am. Ugh! I'm not quite sure how to move this pattern to a point where I can stay up until 9 or 10 pm, while waking up about 9-10 hours later. I usually am in bed by 5:30 pm because I just can't stay 'up' any longer, so I prop myself up in bed and read until I get tired.

Kitsa,

I looked at your blog and you have a terrific sense of humor! I am also struggling to keep up my exercise level, although I'm not doing as well as you are. I try to get in 3-4 workouts a week, and do ab exercises as well. I have a treadmill at home, and I belong to a gym where I love to do the EFX machine - on good/better days! Sometimes it makes me feel a little better, and sometimes it makes me down for the count on the next day, but I know it's imperative to do as much as I can. I have to have lots of water around when I work out, and usually need to take off a day between sessions.