Dizzy Dame

Since you were on an extreme diet (the raw foods with no meat) you might want to consider getting blood work to make sure your potassium and iron levels are normal. I'm not saying your diet caused your symptoms, but sometimes low potassium levels and low iron levels can cause some of the symptoms you describe. Do you have a good cardiologist or neurologist? Those are the two specialties who may be able to help you. As for me, I'm on a really balanced organic additive-free diet. I try to follow the food pyramid with regards to how much meat, veggies and fruits I eat. Although the most helpful diet changes have been increasing soduim. However, you shouldn't dramatically increase the sodium in your diet without talking to your doctor first, because high sodium will raise your blood pressure. I hope you find some answers soon! Cheers, Lauren

Sores in your mouth can also be a sign of an autoimmune disease. Since you already have autonomic issues, you may want to ask your doctor about bloodwork to look for antiganglionic antibodies, which cause an autoimmune condition that damages the autonomic nervous system.

Susie, I'm so sorry to hear about your medication problems. It must be so frustrating to go from a fairly functional level to an unfuncitonal one, and with the fair coming up as well! It seems like my POTS holes also coincide with important events in my life that I so want to be healthy for. I really feel for you, and wish I had some wonderful piece of advice, but the only thing I can tell you is what I've been telling myself all this time: hang in there. It will get better eventually. ((((HUGS))))) -Lauren

Daniel be careful. If you can possibly tolerate sitting up, you should continue to try to stay upright as much as possible. I was bedridden for the first 6 months I was sick, and all that time lying down made everything worse. It took over a month of physical therapy 5x a week to get me to a place where I could walk again after all that time in bed. So only lay down when you have to, and only for as short a time as possible when you're awake. This way you can keep the inactivity from exaccerbating your POTS. I know it may be a bit less comfortable to sit up, but you have to try as long as it's not too uncomfortable, and as long as your HR and BP can take it.

I've been told I'm borderline hyperadregenic, but my BP usually goes down, sometimes less than 20/10 mmhg, sometimes more. Not event the experts understand why this happens to me...go figure.

Welcome home Melissa I hope you get some much needed rest, and that you don't have any more hospital stays for a loooooooooong time! Hugs, Lauren

When I was bedridden for the first 6 months of my illness and it's like other people have said, I spent all day feeling too sick to think straight and trying to recover from the few times I did have to get up to go to the bathroom. As for the progression of POTS, POTS itself is not progressive, but if you have an underlying disease that is progressive, like mitochondrial disease, or an autoimmune condition that's causing autonomic neuropathy, then sometimes symptoms will progress over time. Most people with POTS do not progress however, and improve with proper lifestyle changes and medications. For example, this time last year, I was bedridden and even sitting up for a few minutes exhausted me. Today I went to a doctors appointment, came home and folded laundry, then went to BestBuy (all in my wheelchair of course, but I was still able to do it and not feel horrible afterwards). There are many here on the forum who were very sick and are doing even better than me.

Well, it's been 3 hours since stopping the midodrine and starting the mestinon. Fortunately I don't feel any of the famous side-affects of the mestinon, in fact, it's like I'm not on ANY medication at all. This isn't' so good since my heart gets really unhappy when I don't have my midodrine in my system, and since the mestinon doesn't seem to be doing anything, I've had a resting HR of about 120 for the past two hours. Every time I stand up my heart goes out of control. I'm in the process of trying to get in touch with my doctor to see if I can take my midodrine...because otherwise I'll be in a bad way. Just wanted to update

When did they change that about the liquids? I flew less than 6 months ago and had no problems taking my gatorade on the flight. I have a hard time believing they would make a rule like that. I think perhaps you guys were misinformed. A rule like that would violate DPTAC protocol.

However, there may be a university closer to you who specializes in Autonomic Dysfunction. Vandy is really more known on this forum for their Med trials. You might want to do some research before committing to travel so far. I'm not discouraging you from going to Vandy, I just wonder if there are other options for you.

I'm sorry you were left with more questions than answers. But hopefully whatever is wrong will be more treatable than POTS, which as you've probably learned, is difficult and sometimes impossible to treat sucessfully. I'll keep you in my thoughts as you continue to journey for answers -Lauren

Thanks guys! I've heard from doing a serach here that some people need a few days to adjust to it. I'm okay with a few muscle twitches if it makes me feel better I already have upset tummy issues, so I hope it doesn't exaccerbate them...but honestly I'd rather have an upset stomach and be able to walk around, than have a happy tummy and be stuck on the couch, ya know? Hugs and thanks, Lauren

Hey guys, I'm starting mestinon tomorrow, 30mg every 4 hours. I'm going to take it alone for the first few days, then incorporate my midodrine. Does anyone have any advice for taking the mestinon? Any good experiences/bad experiences? Has anyone sucessfully taken mestinon with midodrine? Thanks!!! -Lauren

Daniel, Alot of your questions are going to be impossible for us to answer. There's no way for us to know if your symptoms are going to progress or if you'll ever get better. To answer these questions, you'll have to continue the road you've been on, going to doctors and knocking on doors until you start to get the answers you need. I've been sick for 5 years, but my illness became very bad about a year ago. Despite being very, very agressive in trying to get a real diagnosis and treatment, I'm still searching for answers. It took me 3 months of being bed-ridden to get the autonomic disfunction diagnosis, another 3 months to get a work-up at Vandy and be diagnosed with Hyperadregenic POTS, and another 6 months to get to a decent neurologist to explore my other strange symptoms. I've now been very sick for 1 year and still don't know what's causing my POTS, and if I'm going to get worse or better. Even after I get my underlying diagnosis, I still won't know if I'm going to get better... What I'm trying to say is that only time, and an agressive pursuit of answers are going to give you a good picture of what's happening. But keep fighting as hard as you can! If you refuse to give up, eventually you'll get the answers you want. Cheers, Lauren

Congratulations Persephone!!!! You must be so proud Please keep us update as to how you're feeling, and how this wonderful opportunity goes for you. Hugs, Lauren

You can go just for an outpatient appointment. That's what I was originally scheduled for and while I was there they offered me to join the inpatient med trials.

Feel better Amy! I know it's difficult to feel good one day and bad the next

Thanks so much emily for continuing to keep us updated! Of course, I'll continue to pray for our little sunfish

Yup, it was definitely an unpleasant test, and the doctor never warned me about it, he just started sticking needles in me and I was like HOLD UP! but by then it was too late. My favorite line was "try not to wince, it's interfering with the test". Sheesh! At least it's over

I've never had that feeling before, Linda, but I wanted to stop in and say I'm sorry about the allergies! Allergic to hopital soap? I'm allergic to latex and ALL adhesives...I guess between the two of us we're just allergic to hospitals Feel better, Lauren

I get this all the time, but my doctors think I might have MG, so I'm not sure what's causing what. You should definitely get her checked out though. Her breathing problems may be caused by something other than the ANS dysfunction.

Em, Thanks for posting the update. That sounds so horiffic for poor melissa!! I really hope she gets a break from all this soon

Em, Thanks so much for your detailed answer! I did like Dr. Chaudry although his bedside manner isn't very good. He does seem to be interested in the root cause of all my problems, whereas every other doctor I've seen seemed only interested in my symptoms (ie. POTS, etc). NN, The small fiber EMG is where they insert a long needle into your arm or face or hand and electrically shock the area. The needle is thin enough that it only shocks one or two muscle fibers whereas a regular EMG shocks clusters of them. The small fiber EMG is the most detailed of the kinds of EMGs and is capable of picking up trace muscle weakness (like mine is). I can say it's one of the most painful tests I've ever had done. My arm's still sore and stiff from it! Hope that helps!

I'm doing okay. I did survive the elevator incident thankfully. I think getting that IV saved me from a weekend of havoc. Right now I'm just coasting until the fall when the weather calms down. Then I hope I'll start being able to get out more, ya know? Hugs, Lauren

sorry, I thought this was a new post from Ling and was going to ask how her baby was. I just realized this is an old post of hers.