potsgirl

I was there a total of 11 days. It's hard to plan how long you'll be at the clinic, because if they find certain things out in your testing, you may be scheduled to see a different doctor or go through more tests. It sounds like you have a set time span, though. It's hard to say if you might need to stay longer if they'd like to do additional testing. I figured I might as well stay and get everything done rather than have to go back another time. They really work with your schedule, though, and additional appointments are usually the next day or within a couple of days.

Where are you staying?

jana

Alicia,

On my good days I can drive, but I wouldn't be comfortable driving long distances. On my bad days, when my vision is funky and I have brain fog, I don't drive myself anywhere. Luckily, most of the places I really need to go are close to me - within a 5 mile radius or so.

jana

Hi Serena,

I didn't notice any price breaks buying it online. I bought it at a Summit Hut (it's also available at REI and other camping/sports stores), and it was $6.50 for a tube of 12 tablets. 1 tablet to 16 oz of water. You may want to try breaking one tab in half, if the taste is too much for your son. I've only tried the tri-berry so far, which I liked, and I used 1 tab to 16 oz water.

Cheers,

Jana

Good for you that you're back at work. Keeping busy is much more helpful than sitting around the house being angry and sad. You're stronger than you know, and you'll prove that to yourself when this is done and over with. I too almost threw my rings away, but a little bit of advice here...if you decide to get rid of them, don't pawn them! Sell them to someone else instead. You'll get a lot more money, then go out and buy yourself something fabulous!

Sending positive energy and strength your way.

Hugs,

Jana

Wow...I couldn't improve on what Mack'sMom said if I sat here all day. Very wise words of wisdom from someone who's been there and is still there.

jana

Rene,

What a bunch of junk. Please, please go see someone who really knows their stuff and stop wasting your time, energy and money on all of these doctors who aren't doing anything for you. Somehow there has got to be a way to get you to the Cleveland Clinic, Vanderbilt, or Mayo, or the place that Kayjay recommends. You need to get some answers and treat your condition appropriately. I'm thinking of you and wishing you the very best. Email me if you need to, or want to talk!

Cheers,

Jana

I was just at the Mayo Clinic in Rochester this past March, and I really think you'll like it. Which doctor are you seeing? I saw Dr. Brent Goodman. Are you staying at one of the hotels that connect to the center? It's so convenient with all of the walkways. Also, the clinic has computers that anyone can use to keep in contact. It's just down the hall from the main info booth on the ground floor, and past the gift shop. Let us know how you're doing! Good luck.

Cheers,

Jana

Hi~

I'm not sure if you saw the postings on Nuun or not, but that's another good option if you can tolerate small amounts of sorbitol. I know G2 has a fairly high amount of this artificial sweetener. Just for another option, Nuun has 6 calories and no sugar per 16 oz serving, and the following ingredients:

Sodium 360 mg

Potassium 100 mg

Calcium 12.5 mg

Magnesium 25 mg

Vitamin C 37.5 mg

Vit B2 500 mcg

It has a lighter taste to it, kind of like flavored water. So far, I think it's pretty good. You can also recycle the tube the tablets come in. No mess to deal with...drop a tablet in 16 oz of water, and in 2 minutes it's ready to drink. Let us know how you like 'Focus', and thanks for the info on G2!

Jana

I get the same thing...I'll be walking around the house, or if I stand and pause for a moment of two, suddenly I just feel pushed down to the floor. My legs collapse, and I sprawl on my rear in total surprise. I really don't feel it coming, it just hits and I'm gone. I know I need to check with a neuro, too.

Cheers,

Jana

Dear Bella,

I am so sorry that you're feeling so sick, sweetie. I've been thinking of you and wishing the best for you. You are always so positive and caring to others, so I hope you're taking good care of yourself. I've heard the spoon theory before too, but the website with the tees and other items was fun to look at, and I just might order something. I love the 'but you don't look sick' stuff, and the 'got spoons?' tee.

There are a lot of people out here that you've helped, so please take really good care of yourself. Please get ahold of me if I can help in any way. You have lots of support here!

Blessings and positive energy your way!

jana

Before 'POTS' I:

~ Had extreme temp intolerance, avoided the heat and cold

~ Loved salty food, now I have the license to eat it!

~ Always crossed my legs while sitting

~ Could never stand still, always went from foot to foot, hated standing in line

~ Usually off-balance, would trip up stairs, etc

And more! Good topic, Eric.

Cheers,

Jana

Yes, Happy Birthday wishes to you!

Cheers,

Jana

I just bought some Nuun on the way to workout today, and used it at the gym. I liked it much better than Gatorade. You get 12 tablets (1 tablet for 16 oz H2O), which you just drop into your water bottle and let break down for 2 minutes. Much lighter than Gatorade, without that medicine-like aftertaste, and only 5 calories per serving. It gives you all of the electrolytes you need. I tried the Tri-Berry, and I'm going to order more.

Good news, and thanks, Kayjay, for bringing it up!

Jana

Thanks for posting about Nuun. I also hate Gatorade with a vengeance - I've been drinking the G2 formula - but these Nuun tablets look like a great alternative. I have a Summit Hut about 2 miles from my house, so I think I'll stop and pick some up to try. If anyone else has used them already, please let us know how they are.

Cheers,

Jana

I have the same problem, to some extent. I cannot tolerate either Florinef or Midodrine, which makes it hard to treat my POTS/OI. I usually have to start any new med with tiny doses and gradually dose myself up. I haven't been able to start any new meds - the only ones I'm on are the ones I've been taking for about 10 years now. It's the nature of the beast..

jana

Hi Erika,

I have the same problems, and I'm close to your age - 47. My doctor thinks I'm going through perimenopause, which is the stage leading up to menopause that can last 5 or more years. That may certainly be happening in your case, too. Lucky us! But I also think part of it is from the dysautonomia. I get especially sweaty on some nights, where the backs of my legs are really sweaty, but then I get a chill, too. Sometimes during the day I get flashes of being really hot, but I also can get very chilled from the A/C, especially if I go to the store or to a movie. Let's just say I'm one of the fortunate ones who has a very small 'comfort zone' of temps, and always carry a sweater with me!

Cheers,

Jana

I feel really sick when I get sleepy. It comes over me all at once...I'm not sleepy, and then click! I'm sleepy and feel horrible and want to go to sleep immediately. I try not to get to that point.

My primary diagnosis is POTS/OI. They think it was caused by a virus I came down with a couple months after moving to the desert Southwest. I had heart problems first, and am still not sure how the two are related, or if they are at all. I'd love to know!

Yay, Brye! I was also approved last month. Now I just have to get my long-term disability approved permanently. For those of you out there trying to get disability, there is hope! Get a lawyer and fight for your rights.

Cheers,

Jana

My heartfelt sympathies to you during such a difficult time. Please remember to take care of yourself...be kind and gentle to YOU. It must be very hard to have your soon-to-be ex still living in the house with you. Take the high road and stay strong. Things will work out for the best in the end. Big hugs and positive energy your way.

Be well,

Jana

How funny....I can do aerobic work easier than I can do weights. Usually by the time I'm done working out, especially if I've worked too hard, I feel pretty depleted. I'm glad you feel better, though!

Cheers,

Jana

Marni,

My heartfelt thoughts go out to you as you try to work through this intensely traumatic time. You're right - marriage is supposed to be through thick and thin, and the women (and men) here on the Forum who have a boyfriend/husband/best friend who truly supports them through everything and understands are so incredibly lucky. I know that there are many times that I can't believe my boyfriend is still here, and sometimes have to wonder if I'm really worth it....But I know I am, just like you are worth all of the support in the world. If your husband's final decision is to separate, you'll go through stages of anger and grieving, but in the end, you'll be open to meeting others who will really give you the unconditional love that you deserve.

Peace,

Jana

Erik,

Where did you find this? I would love to have one to test myself at home.

Thanks,

Jana

I think you're in excellent company, Kayjay, so don't worry too much. I think many of us here wince when we see some of the things we've inadvertently misspelled or the poor grammar we've used. No worries.

I can completely relate to this, all too often! I feel so weak and fatigued, yet can't take a nap or sleep well at night. Almost every day after lunch I lie down and read for half an hour, then turn out the light and try to at least rest, but almost never sleep. My arms and legs feel so heavy, it is like walking through water or having weights dragging them down.

It's usually worse when my BP is really low. I get the same kind of BP readings you do, Erika, when I'm standing I'll have a BP around 75/62, and even when resting in a supine position I'll only have about 20 points between my systolic and diastolic readings. My HR is sure quick to more than double, though!

I'd love to know how to combat the overly fatigued feelings, though, so if anyone has an idea other than tons of salt, water, and electrolytes, I'd love to hear it!

Cheers,

j