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appaloosatb

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About appaloosatb

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  1. I've just started to work with a therapist to tackle my frustrations about how POTS changes my life as well as hopefully resolve PTSD caused by childhood trauma, which has resulted in insomnia, nightmares, and flashbacks for 20+ years. My therapist plans to talk to my doctor about possible implications of different types of therapy to see which will be the most helpful without causing enough stress to make my POTS symptoms flare up. I feel like it's a really difficult balancing act. The flashbacks and POTS symptoms mirror each other - tachycardia, arrhythmias, difficulty breathing, numb or tingling hands and feet - but require very different approaches. If my symptoms are caused by POTS, I need to lie down and elevate my feet quickly to avoid fainting, and sometimes I still pass out (something I know most of the forum members are all-too-familiar with). If my symptoms are caused by a flashback, moving seems to be the most helpful. We're specifically discussing exposure therapy regarding the PTSD, but have also discussed other therapy modalities. Does anyone have any suggestions for therapy options that would address childhood trauma without worsening POTS symptoms? My therapist has been checking out this website for more info on POTS and will follow this thread too. We're both open to suggestions!
  2. My nutritionist suggested this possible drug, but it sounds too good to be true. Has anyone heard of or tried it, and what did you think? Here's the website she sent me: http://www.lowdosenaltrexone.org
  3. I don't know why, but the same thing happens to me. My symptoms are always much worse in the morning and best at night.
  4. Thanks for the information! I'm currently taking the following meds: Ondansetron 4mg - 2 in the morning, 1 in the afternoon, 2 in the evening for nausea Propranolol 20mg - three times a day Midodrine 5mg - three times a day Would any of these account for the new symptoms? I've also been having horrible leg cramps at night that wake me up, this has been going on for about two months now. The information on EDS is interesting. I'm so swamped in medical bills that I've stopped going to the doctor. My doctor doesn't return phone calls, she just has a nurse call me back and tell me to come in, but I can't afford any more office visits for awhile.
  5. Lately my POTS has been flaring up (fatigued all the time, nauseous, lightheaded, heart racing for no reason). I've also had a new symptom: my joints crack all the time. Whenever I move, my hip or shoulders crack. If I turn my head, my neck cracks. Yesterday my shoulder cracked and I couldn't lower my arm all the way until it cracked again. Today I moved my head wrong, and now I have shooting pains running from my right ear down my throat. This has never happened before. Usually if my back or neck starts cracking a lot I go to the chiropracter, but I haven't had my hip or shoulder involved before. It mostly seems to be all along my right side. Has anyone ever had this happen? Is this related to my POTS, or something else entirely? It's scary - I'm afraid to move in case my joints crack again and it hurts worse. Even just sitting here, my right hip is very sore and feels like it's not positioned right, if that makes sense.
  6. 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.
  7. My doctor keeps telling me that POTS is just a temporary ailment and that it should go away on its own eventually, but it seems most people here have had problems for a long time. It it true that POTS can just disappear like it appeared, or am I stuck with this for life? I just read through the literature I got at the Mayo Clinic, and it seems to contradict itself. In one place it says that for most people the symptoms do go away with time, but then the two personal stories make this sound like a more chronic condition. My doctor also seems to think that if I can just exercise enough my symptoms will go away, but I'm so frustrated by exercising. I walk my dog daily, probably 1/4-1 mile depending on how I'm feeling. I used to bike with her too but now I don't dare. I was told to work on strengthening my abs, but I'm frustrated with that as well. I can only do 1-2 push ups. I can do about 20-25 sit ups, but then I faint. Even if I stop early (after 15, say), I feel horrible the rest of the day and oftentimes the next day.
  8. 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.
  9. 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.
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