Dizzy Dame

What an idiot. I'm glad you survived him! I hope the UTI clears up asap Hugs, Lauren

Hi Melissa, I just wanted to pop in to let you know I'm thinking of you I hope you're feeling a bit better today, and that the stress of the move isn't making your symptoms wose! Hugs, Lauren

I love it! ...when the 911 dispatcher says "did you faint again?". ...when the IV nurse thinks you've done heroine because you can find your veins better than she can. ...when the grocery store starts only carrying the flavors of Gatorade you usually buy. ...when your "baseline" vitals are technically considered a state of shock in medical textbooks. ...when the grocery store clerk honestly asks "where's the team?" when you make your gatorade run.

Sonotech, You'll continue to be in my thoughts and prayers. Know that all of us are pulling for you and that we can't wait until you're well enough to come back and chat If you give morgan your hospital room address, I'd love to send you a card! Hugs, Lauren

I have excessive urination...but I also drink alot so it's the "chicken or the egg" scenario with me. I've had just about every test on the planet and no one could find anything wrong with my bladder or hormones either. My theory is that my blood volume is so low that it makes me thirsty all the time and my excessive urination is just a result of drinking the 4-6 liters of fluid a day

Oh Melissa! You're a mess girl I'm so sorry to hear your liver's been acting up, but I'll be praying it gets back to normal and you start seeing some good changes from the IVIG treatments. As always, your attitude is so admirable...I just know that with all that positive energy you'll do fine Feel better and keep updating us as you're able. ((((HUGS)))) -Lauren

Hi Dionna, I encounter the same thing in my family and with my boyfriend (who lives with me and functions as caretaker on days I'm too sick). I think that kind of "you should have done x" response is just their way of trying to control something that is impossible to control. It's very difficult and painful for our loved ones to truly accept how sick we are. I've been very sick for a year now. Last week my dad was staying with me and he and I decided to go to the bookstore one day. He wheeled me out to the car and parked my wheelchair in the sun (with me in it) while he searched for his keys. From sitting in direct summer sunlight for less than five minutes, I began to have a horrible POTS surge and needed to be quickly rushed back upstairs where I spent the rest of the evening in bed in a horrible POTS hole. The next morning my father was very apologetic and he said "it sounds stupid but I never though of you as very sick until yesterday." I think us being as sick as we are is terrifying for our families and loved ones, and they sometimes have very strange ways of dealing with their own fear and insecurity about our illnesses.

I wouldn't call the feeling fatigue either because I'm not sleepy, I'm just utterly exhausted and need to lay down. The feeling also only comes on with exertion or emotional stress, not with staying up late or not getting enough sleep...but I'm not sure how others would classify it.

Lord, I get this all the time! It's like a nausea/fatigue/dizzy feeling...like I just ran a marathon or donated a ton of blood. It's my most debilitating symptom (I was trying to describe it earlier but couldn't). I'm not sure if it's an NCS or POTS thing since I have both, but I do know that you're not alone

Morgan, it's good to hear from you! I'm glad you're getting the pacemaker...hopefully it'll make a difference in the syncope, which I know is dangerous and terrifying when you don't know if/where/when you're going to to pass out. I think you're also going into this with the right attitude...it's not a cure-all, but every little bit helps Good luck and please let us know how it goes when you're feeling well enough to get on the computer. Hugs, Lauren

...Linda, I also forgot to ask if you were thinking of suing their pain program for such a negligent misdiagnosis?

Hi Linda, I'm so glad you're finally starting to get some answers! and hopefully the new treatments will help with your symptoms. Stay strong -Lauren

I have horrible nightmares as well. I brought it up to my therapist and he said that fighting a chronic illness is a lot for the subconscious to work through, and that he's had many patients with chronic illnesses who also have chronic nightmares...not that that helps at all, but at least it made me feel like I wasn't alone. I hope you start having sweet dreams

Ooooh. Stopping BB's without weaning can be very dangerous. You should try to get in touch with your doctor right away...I'm not sure what other advice to give you but please talk to your doctor asap.

Have you tried ensure? When I first got sick I lost a ton of weight and started drinking ensures to keep from getting too skinny. two-three a day on top of what you're already eating should help put some weight on...but you should really talk to your doctor about your low weight. Let us know how you do -Lauren

Hey there Sonotech, Just wanted to wish you a happy tomorrow! I hope you're feeling better today than yesterday HUGS!!! Lauren

Thanks Nina and Melissa, and Nina, I'll take a vanilla cake w/ midodrine sprinkles I certainly understand the middle ground, Melissa. I'm just not quite ready to wind the fight down. We still haven't fully explored many options like the mitochondrial angle, and the myriad infectious diseases that could cause symptoms like I have. As someone who lived in the amazon jungle for a year in an open-air thatch hut, eating fruit right off the trees, I want to make sure I'm not carrying some weird jungle bug around in my blood. I think if I get the mito tests and all the possible infectious diseases ruled out, then I'll take a break and try to focus on healing without answers...but I want to make sure that I've exhausted all my options before I "retire" so to speak. Thanks again guys for all the support and good wishes!

Thanks Lulu, for your support, and it's never too late to chime in Aussies Girl, I think maybe for some the cause of their POTS can't be found, but for most POTS is caused by a virus, or an accident, or some have a family history. I never had a virus, never had an accident, and my illness is more than "Just POTS" I have many other symptoms of sensory and motor nerve damage that can't be accounted for. I feel that since I was very healthy and active all my life (I was an athlete before getting sick) and since there's no family history of any autonomic dysfunction, that I have something more than "just POTS" going on. As for my typical day, I'm pretty sick. Most of the time I'm on the couch. On good days I can leave the house for a maximum of about 4 hours in my wheelchair. I go through periods of ups and downs, right now I"m in a down period. Last spring I was able to attend school part-time, but this semester I'm too sick to do much of anything. I do feel that everyone should try to find a "root cause" for their POTS. Contrary to what some of my physicians have said, I don't believe that a body can just deteriorate on its own for no reason. There's always a reason, it just may be very hard to find. -- Thank you all again for your support! This forum has given me the strength to fight for answers, and I'm sure will continue to give me strength.

Thanks guys for the support! I know I don't need another TTT, so I'm not going to do it. I've already had an extensive autonomic work-up at Vanderbilt so any other tests they could do really wouldn't be helpful. I know I have POTS and I know exactly what my body does whenever I stand.

It seems that ever since I've gotten sick, every doctor I see examines me, looks at my previous test results, then referrs me out to another "specialist". After over a year of agressively searching for an underlying cause for my POTS, I finally ended up at Hopkins with a doctor I thought would have an answer... I just got back from my follow-up at Hopkins where my neurologist suddenly decided that even though my EMG was positive, and my ACH receptor antibodies were positive, that I don't have MG (because I have no symptoms for the disease) and that whatever's going on with me is POTS related...then he referred me to a POTS doctor in the metro area for ANOTHER TTT (this will be my 4th). I'm beginning to feel like I'm going to lose my mind! Everyone I see takes one look at my file and backs away slowly. No one wants to touch my case, and the people who do unfortunately don't know where to begin with my treatment. I have a great PCP right now who's working really hard to get to the bottom of things, but she can only do so much without expert advice...and all the experts keep referring me to other experts! Thanks for letting me vent. I just don't know what to do anymore. I've hit brick walls the whole way since getting sick and I don't know if I have the strength to do it anymore. I know it's wrong, but sometimes I wonder if I should just accept the fact that I'm going to be sick and I'll never know the real cause of my symptoms and that's that.

I lay down, elevate my legs and force myself take slow, deep breaths (I have a way of counting to keep them slow...I count "one-onethousand, two-onethousand" when I breathe in, hold it for one second, then breathe out for four seconds). Most of the time it's a matter of waiting out my surges, but if I allow myself to breathe too quickly (like my body wants to) then I make things worse. It may be difficult to force yourself to breathe slowly when this happens, but for me that's the only way to keep the surges from going out of control. Hope this helps! -Lauren

Dionna, I'm so sorry to hear about your horrific flight expereinces. That's really great that the flight attendants on your second flight were so attentive. Hopefully you won't have to fly again anytime soon. -Lauren

Gwendolyn, I noticed that you said you drink sugar-free crystal light. Be careful with sugar-free drinks, artificial sweeteners like aspertame can exaccerbate POTS symptoms and can cause hypotension. My doctors have advised me not to drink/eat any artificial sweenteners because of it. Just keeping an eye out

Good to hear from you Sonotech! I'm glad to hear you're in good spirits but I'm so sorry to hear that you're condition isn't improving any. You'll be in my thoughts and prayers! ((((BIG HUGS)))) -Lauren

I forgot to add that Gatorade has just started "fittness water" called propel. It contains sodium (though not as much as gatorade) plus almost no sugar and no artificial dyes. You can add a bit of extra salt to it to get the same sodium intake as gatorade. I should warn though that Propel contains 50% of the recommended dose of Niacin (vitamin b3) per bottle, and a niacin overdose can be very dangerous, so one shouldn't drink more than 2 bottles (roughly equivalent to 1 liter) of propel a day to keep from risking a niacin overdose. Oh, and Gatorade does not contain high fructose corn sweetener but rather is sweetened with sucrose syrup, which comes from sugar cane.