marnian

You can buy Pedialyte in bulk if you find it helps you. I order cases of various products by Ross through my pharmacy but they also deliver if necessary: http://rosstore.com/. I sometimes also drink fruit punch LiquiLytes by Gerber because it's easy to find in powder form and it tastes pretty good. Not great for regular use, but easy to slip into your purse to pour into a water bottle later in the day.

I'm not an expert, but here's my understanding: Ferritin is a protein that binds to iron in your body (bone marrow, liver etc), storing it and releasing it as needed. So measuring ferritin indirectly measures your stored iron. Iron is also bound to transferrin in the blood and hemoglobin in your red blood cells. When you get your "iron level" they're normally talking about your serum iron level which is the amount of iron bound to transferrin in your blood. Sometimes they also talk about your "total iron binding capacity" (the amount of iron needed to bind to all of the transferrin) and "transferrin saturation" (the percentage of transferrin with iron bound to them). Presumably your doctor ran all of these tests and concluded that the right approach is to increase your iron intake. Maybe your doctor thinks your iron reserves are running low. I ran across one paper that said ferritin under 50 might contribute to hair loss, but it didn't give any information about how long it would take to change it.

EPs tend to be at least somewhat familiar with POTS so they should be able to tell the difference/relationship with POTS and SS Syndrome. They're likely to order EKGs, Holters, and tilt tests just like cardios. There's also a version of a stress test where they give you medicine rather than walking/running on a treadmill if that might help. There are some more invasive tests too, but I wouldn't worry about them until they suggest it. It's better to just focus on one thing at a time. Before you agree to anything though, look around on the boards here. Some tests have "extra features" worth avoiding.

I know exactly what you mean! I decided today that cleaning just isn't worth it anymore and called a cleaning service to get pricing information. It means shifting my budget around but I much rather use my energy for something I enjoy.

It might be a stretch, but is there any way to find a nurse or doctor to fly with you from Israel to NY? There should be a reasonable number of medical professionals that fly that route, but finding someone might be hard. At least in Baltimore (where I live) I'd start by calling Jewish Family Services and explain my situation. With the proper care before, during, and after the flight it might be easier on you to fly.

I see specialists for specific symptoms (EP cardio, neuro, gastro...) but my internal medicine doc is my main doctor. She's really awesome! Today she even called just to check in and see how things were going since she hadn't heard from me yet this week. I much rather have a doctor that is friendly, supportive, and helpful than an "expert" in the field. I think it's also important to have a doctor that will admit when they just don't know what to do and ask someone else for a consult. Sometimes doctors can even just talk to each other rather than having to deal with getting to an appointment, insurance, etc. I'd focus on finding a doctor that you feel comfortable with and is willing to put in a little extra work. They definitely exist!

Midodrine has really helped me. Like others have said, everyone seems to act a little differently, but it makes a huge difference for me. It also lets me be on a higher beta blocker dose than I'd ever be able to tolerate without it. But oh...the goosebumps and the chills...At first it seemed harmless that half the day I had goosebumps and the other half the day just pressing on my skin caused goosebumps. Then I tried shaving my legs.... yikes!!!! I suppose fuzzy legs and summer sweaters are a small price to pay for being able to stand though

Hi Holly! I'm pretty much in the same boat you are so I sympathize! My symptoms also started and were diagnosed this summer. It's been very stressful on me, but the medicines are starting to work and at least I'm home now (I was in the hospital for much of July). I've found it's even harder on the people close to me since they have to try to live their normal lives at the same time too. I'm lucky in that my job has short-term disability that's covering me for now. I've found that watching my favorite movies, reading information online, and playing simple computer games helps with the stress. I'm still going to the hospital many days for tests, but at least I get to come home in the evening. On the positive side though, Maybe these recent quick diagnoses means the medical community is learning more about POTS!

If there's a concern for neuro symptoms of lyme, it might be wise to test your CSF as well. I realize lumbar punctures are pretty icky but finding evidence of lyme disease in your spinal fluid would point more strongly towards agressive treatment. Like all lyme tests, it's not perfect, but it's pretty good. If you're really scared of the test, they can give you medicine to make you less anxious or do it under flouroscopy (a fancy x-ray) in some hospitals (that's what I do)

I think many medicines in that family take a little while to kick in. There might be a chance you're just exhausted from your travels and that's complicating the issue. I'd try to stick it out and see how it goes. This is probably just a glitch. But....A number of years ago doctors put me on Paxil (it turned out I had lyme disease but after a 3 day hospital stay the doctors there decided all my symptoms were anxiety-caused). I personally didn't feel particularly anxious or depressed but I figured I should do what I was told. Paxil basically made me uninterested in the consequences of anything I did. Stay in bed all day? Sure! Skip a doctors appointment? Why not! Tell an unstable close friend that I hate 15 things about him? Of course! It was horrible!!! As soon as I got off of it, everything went back to normal but it took awhile to decrease the dose safely etc. I guess what I'm trying to say is that some people have amazing results with Paxil. Some people don't. But I think you have to give it 4 weeks to find out if it works for you (as long as the reactions aren't so bad you can't stand them!).

I've felt this in my hands, legs, and face before. This first time it ever happened was when I was in the hospital a few days before being diagnosed with POTS. I was in a lot of pain from something else at the time too though so my nurses/doctors thought it was probably a weird pain/anxiety response. Given the situation, I agreed at the time. Strangely enough though, having to suffer through an EMG the next day (an icky nerve conduction test) made it stop in the limbs they tested! When I told my doctors this they changed their mind about pain/anxiety but didn't have a better idea. For me at least, it's tolerable and rare and I just chalk it up to one more thing that doesn't seem to be quite right. If anyone has ever gotten a good answer though, I'd be quite interested!

I'm cold very often too. At times, the chills are so bad that I'll be cuddled under 4 blankets in the same room as someone comfortable in a t-shirt. Other times though, I feel just fine. I've found that the best thing to do is just keep lots of layers/blankets around to try to be as comfortable as possible.

*hugs* Waiting for test results is always the hardest part for me. I've found a few simple that help with the anxiety though. Slow, deep, focused breathing helps. Daydreaming about a favorite vacation spot helps. Reciting childhood rhymes really helps me (Yes, it's pretty silly, but hey, it might work for you too!) Once a nurse noticed that I whispering my "abc"s during a painful procedure and admitted that she does the same thing sometimes.

Some people have similar headaches from idiopathic intracranial hypertension, but it's a very rare condition and not the classic headache from it either. A first step on this would be looking into your eyes for evidence of papilledema (with a bright light at the doctors or eye doctors). It's not worth worrying about, I'd just make sure a doctor does an eye exam.

A wireless mouse/keyboard really helps (and not nearly as expensive as a laptop). But I'll restate the advice about trying to sit up when you can. My doctors said that tachycardia is only dangerous if there are other problems with your heart or it's really, really, fast. Anything in the "this heart rate would be okay if I was jogging, but it feels horrible now that I'm just standing here" range is okay on and off. Their advice was to limit the time >150bpm to the time I was exercising a day before all this started. And to lay down if it ever hit 200bpm to bring it back down. I'd try to get your doctors to give you guidance like this. I'm sure it depends on a lot of different factors. Although I should add that I need anti-nausea medicine to be able to tolerate following this advice. Laying down feels better! (At least without medicine to control it)

I've also been told that it's better not to be on true bedrest if at all possible. Sitting in a recliner is better than lying down. Since I find it easier to transfer from a recliner to wheelchair than from laying in bed, sitting makes getting to the bathroom easier. Although there have been days where just sitting up has been more exertion than I can tolerate. With any reduced activity, doing very simple leg exercises can help pass the time and help preserve strength. Just things like, point and flex toes. Sometimes you can negotiate a "peace-treaty" with your doctors about leg exercises and shots to prevent blood clotting too. (I can't stand the shots in the belly when I'm stuck in bed.) On my bad days (weeks...) I've watched TV, listened to books-on-tape, and napped a lot. At a bit better, I talked to friends on the phone and played on the internet too. My synagogue will send someone to keep me company during the day if I get really lonely. I've found that helps a lot. My insurance company will pay for nurses and physical therapists to visit me at home when I'm very ill. Obviously, I'm lucky in this regard, but it really helps! They can make sure my doctor is kept in the loop and that I'm not getting worse etc.

I have occasional chest pain that's worse with breathing as well. It seems to happen with very high or very low heart rates, but not always. Since I've had a recent normal chest X-ray and echo, my docs aren't too concerned. I was told to call 911 if the pain is worse than before, different than I've felt before (stabbing vs dull etc), or I'm gasping for air. Obviously, you'd want to get your own doc's opinion about when to call for help though.

Hmm...I started florinef after the intracranial pressure diagnosis. I hope that's not making it worse now too!

Last month, I was diagnosed with POTS and increased intracranial pressure with no known cause. The latter is also called pseudotumor cerebri and other names, but basically, it means your MRI/CT/spinal fluid looks normal other than the fact your opening pressure on a spinal tap is very high. Has anyone heard of these things being related? My doctors thought it was weird that 2 rare conditions appeared together since I was 23 and healthy/fit before this started, but they didn't know how to link them. On a side note, the way I ended up being diagnosed with both at the same time was that I saw my primary care doctor because my stomach was driving me crazy, she decided I was probably dehydrated and sent me to the ER. The doctors there admitted me because "something weirder was going on" and they ended up keeping me for 2 weeks, followed by a nursing home for 1 week. But I'm home now finally! Although reading your stories, it looks like I was lucky to be diagnosed so quickly. I have another dozen doctors appointments coming up so we'll see how that goes. Hopefully I can find the energy to make it through all that!