Introduction: Sara

[appaloosatb]

Hi, my name is Sara and I'm a 24yo female nonsmoker. I've always been moderately fit and very slim. I'm a professional dog trainer full time and also do dog grooming part time (I did grooming full time until I got sick).

I've always had trouble with illness. Any time someone else got sick, it seemed like I would catch it and my symptoms would be worse than other people's. Last July/August, I got a really bad cold that turned into bronchitis. At one time I was coughing so hard that I had to go to the ER because I couldn't breathe, and later that week I coughed hard enough that I cracked a rib.

In September my rib was still very sore, and I started getting flu-like symptoms. I was throwing up, running a fever, and just generally feeling crappy. Then I started fainting anytime I would throw up, and then for no reason at all. Just standing up would cause me to get lightheaded and faint. It felt like my heart was racing all the time, and it also didn't feel like it was beating right.

My doctor at the time thought he heard a heart murmur and ordered a Holter moniter. It came back with periods of up to four hours at a time where my heart was going in the 170's, and I was diagnosed with supraventricular tachycardia. The doctor prescribed beta blockers, which made my fainting much worse but helped with the feeling of racing heart and irregular heartbeat.

The doctor told me that I had anxiety which is why I was fainting. He prescribed klonazepam, which didn't help at all. He wanted to prescribe different anxiety meds and didn't believe me when I said that I wasn't feeling anxious about anything but my symptoms, and I only felt anxious about my symptoms when they were happening. Luckily my mom came with me to an appointment (I wasn't driving at that point) and chimed in that she didn't think my problem had anything to do with anxiety.

My doctor referred me to the Mayo clinic. Over the rest of 2009 I had multiple EKGs, an echo, one regular holter moniter, one 12-lead holter moniter, an MRI, a tilt table test, and an autonomic nerve test where they did sweat cell testing, tilted the table up, and had me do deep breathing exercises/blowing into a tube. I was finally diagnosed with POTS by Dr. Goodman in neurology, although I also found Dr. McLeod in cardiology to be very helpful.

I've been on propranolol and midodrine since January and have seemed to do okay. I'm careful to drink at least 3 Liters of fluids a day. Dr. Goodman also recommended 8 grams of salt a day, but I just can't do that so I just eat as much salt as I can. I've never been someone who really likes salty foods. A nutritionist friend recommended that I buy empty capsules at the local health food co-op and fill them with sea salt, which I've been doing and found to be really helpful.

I've been hanging on okay, but this past two weeks my symptoms have flared way up and I'm not sure why. I can't go to the bathroom or stand up without almost fainting, and I've been up until 5am most nights because my heart is racing so hard I can't sleep. I've also been really nauseous, and ended up in the ER yesterday because I couldn't eat anything and would faint whenever I stood up. They did fluids immediately because my blood pressure was so low, but when they did a urine test they could tell that I wasn't lying about keeping myself hydrated and quickly pulled me back off the fluids. I was given anti-nausea meds and sent home. Today my primary doctor prescribed different nausea meds, which have allowed me eat some food.

I've also gained some weight. Initially when I got sick I went from 115 down to almost 100, now I'm up to 127. I feel fat! I know this is because I'm not eating enough. It's hard to even get 1000 calories in some days, and not uncommon to only be able to eat 750.

I'm looking forward to participating in this community and maybe getting some ideas. How does everyone else handle nausea and sleeplessness? I know that these two symptoms are making my lightheadedness much worse. I go into my primary care doctor again tomorrow (a different one then I went to last fall, since I dropped Mr. "It's Just Anxiety"), and going to the nutritionist on Thursday.

[lieze]

Welcome to the group.

I had difficulty eating too and I have done well with a liquid supplement called boost.

It's great because since it's liquid it doesn't require a whole lot of digestion can just easily be absorbed. I'm curious to what your nutritionist has to suggest.

[Christy_D]

My son was also given the "it's just anxiety" by several doctors before finding help. His main debilitating symptom is nausea. He has been nauseated daily since February 2009. He can usually get out of bed in between 12:00 and 2:00 and be able to function. We have not found a medication to help it yet. He is doing much better than he was a couple of months ago though, where he was in bed until late afternoon to early evening (sometimes not at all). Vitamin D seemed to help, but I think that might have only given him temporary relief, as he seems to be slipping back.

He also deals with insomnia. His POTS medication(Doxepin) has a sedative in it, so he takes it at bed time and it helps him sleep. It has all been trial and error, from one medication to the next.

As for the salt, he takes Thermatabs. His doctor put him on 4 a day to get the salt he needs.

[Brye]

My batteries almost dead so I need to be quick. I take zofran during the day for nausea and phenergan at night as needed. I take xanax about 1 hour before going to bed. That helps me fall asleep. I also take a nap almost daily to compensate for the sleep I miss at times at night.

'

Brye

[Rachel]

Hi Sara,

Welcome to DINET. I hope that you find a lot of help, information, and support here.

I too have problems with sleeplessness. At one point I went to a sleep specialist regularly, had sleep studies, and tried lots of different sleep meds. I can rarely sleep more than an hour without sleep meds, but most medications also left me too groggy in the morning. In the end, I found that melatonin works the best for me. I take it nightly now. It helps me to sleep, but doesn't make it as hard to wake up in the morning.

Things that help me with nausea are: peppermint tea (this is the biggest help for me), ginger root capsules, small meals, and not remaining upright for too long.

I hope you can find some helpful treatments.

Rachel

[appaloosatb]

Thanks for the ideas! I haven't been online much to check in here because I've been so sick, but I do appreciate the suggestions.

It's been a very frustrating weekend. Friday I was only able to eat some canned mushrooms sauteed in butter, pieces of carrot, and some microwave popcorn. I spent all night Friday to Saturday in the bathroom because everything that I DID manage to keep down seemed to go right through. I feel so weak because I don't think I'm getting enough calories. Saturday was a bit better. I was able to take in a little over 1000 calories, but then got sick again. Today I've had two sticks of string cheese, a slice of homemade cheese pizza (which made me almost throw up and feel very nauseous), and now I just had a big bowl of cooked broccoli which seems to be doing okay.

Rachel, I've been trying to lie down before/after eating, and that helps! After your post I realized that I do get nauseous whenver I'm upright too long, so tried lying down, and it helped. That's how I've been able to eat pretty much every thing I've kept down this weekend.

CHRISTYD, this is my schedule too if I don't have to get up. I feel best if I can stay in bed until after noon, the rest of the day I feel much stronger and have a better appetite. The earlier I have to get up, the more likely I seem to be to throw up or start dry-gagging.

lieze, I'll check out Boost. Is that similar to Ensure or Slimfast? Dairy-type products seem to make me feel worst, so I've been careful. I've done okay with the powdered Gatorade or Propel to add to water, though.

Brye, I wrote down the meds you're on to ask my doctor about. Right now she had me on Prochlorper (sp?) which helps a bit but not enough to allow me to eat enough each day, and some days I'm too nauseous to swallow a pill.

Again, I really appreciate everyone's suggestions and support. It's so helpful to know that others are going through this too.

[erickamcc0523]

One problem that can be caused by eating is postprandal hypotension (lowered blood pressure after eating). Basically, when something hits your stomach, it sends signals to the brain to send more blood to aid with digestion. For most people, it isn't a problem. With us who already have problems with pulse rate, bp, and sometimes blood volume, it can cause an increase of symptoms. Although it irritates my heart burn something awful, I do lie down (or at least prop my feet up) after eating.

POTS also can effect the automatic muscle contractions that happens in the stomach and intestines after eating. Mine are really wacky, as sometimes it feels like everything just sits there for a few weeks, and sometimes I get to read a big book in just a day, since it seems as if everything is working its way out. All at once.

Also, I notice that changes in weather, especially at temperature extremes (very hot or very cold) will cause my symptoms to be worse. Especially if it's really hot and I have to stand for more than just a few minutes, my feet will become a deep reddish purple and start swelling. My internal thermostat is torn up, it seems, and if it's outside of 60-75 F, my body can't tolerate it. I nearly fainted at a wedding a couple weeks ago (and felt presyncope the whole time) because I just got too hot. This will be my first summer since my symptoms really got bad, and I'm somewhat dreading it. I'm already having worse symptoms than normal and it's not even nearly as hot as it normally gets here.

[appaloosatb]

After going back to the doctor and finding out that I've lost 5-lbs in 2 weeks, she's switching me to Zofran. I couldn't afford it through a pharmacy so I'm waiting to get it through their prescription drug program. I really hope this works, yesterday I couldn't each anything and today all I've had was about half a packet of Lipton soup and some goldfish crackers.