potsgirl

Cordelia, I wish I had the answers for you, and that I could take your pain away - that would make me one popular woman on this site! All I can do is tell you that we're all behind you, supporting you and empathizing with your pain, misery, fear, and the list goes on. I can relate to what you're going through, and wish you peace and comfort knowing all of us on this site wish you only the best. I hope you feel better very soon, and I'm sending positive thoughts and energy your way. Take care, Jana

Hi Suzy, Sorry I can't offer anything new, but just wanted to let you know that I'm thinking of you, and hoping this stage passes quickly. Please feel better soon, and let us know what you find out... Best, Jana

I feel like an idiot. I DO know this, I just wrote the opposite of what I was thinking. Thanks to you and Lenna for clearing this up...Not one of my better moments!

Lenna, THANK you for correcting me. I was thinking the right thing, but wrote the wrong one. I'm embarrassed! Blame it once again on the brain fog... Thanks again! Jana

Jan, I'm sorry that you're having these nasty symptoms and are looking at having to undergo some pretty intense tests again. I have to say I'm in favor of you getting these tests done, especially if you haven't had a work-up for the past 3-4 years. A lot can change during that time. When did you have your catherization eval? Do you mean an angioplasty? I would just get the tests out of the way, and then you know if everything is ok or not. I have a history of cardiomyopathy and bradycardia and have a pacemaker, so I would tend to err on the side of too much instead of too little testing. I hope this helps, and please let us know what you decide. Be well. Jana

Erika, Good for you finding a solution! I can relate to your dilemma. I live in Tucson, and it's supposed to be 103 here today. UGH. Peace, Jana

I forgot to note that Dramamine seems to work as well as the Meclizine, and you can get it over the counter and pretty cheaply if you get the Walgreen or Target version...

I also have this problem, but it tends to be cyclical. I get hit with a bout of it for about 2 weeks every year. My ENT says it's some kind of virus in my brain (sounds really odd, I KNOW) that because I have an area near my left ear canal that was damaged in a motorcycle accident I keep getting this virus back and it heads right to that weakened area. I can hardly move my head without wanting to throw up, I can't drive, I have to lay absolutely still or I get very nauseated. Try either Meclizine (prescription) or Dramamine - they have the same active ingredient - and that will help with the motion sickness-like problems. Hope this helps a little, and take care. Let us know how you're doing, and if the Dramamine helps! Peace, Jana

I've also had this experience, too many times to count. Usually, however, my BP runs low, so I'm not sure about that connection. Be sure that you're not dehydrated. So many times we can get nasty headaches. lightheadedness, and fatigue due to the fact that we're under-hydrated. Some medications can also contribute to these symptoms, and also make us need to drink lots of H20. I try for 10-12 glasses of water a day. Perhaps that might help? Hope you're feeling well soon! Jana

In classic POTS, high blood pressure is usually the problem. Have you been diagnosed with POTS in a tilt table test (TTT)? Usually the criteria for POTS on a TTT is that your blood pressure goes up by 30 or more beats per minute when you go from lying to a standing position. What is your BP like at home when you try this? I can't take beta blockers, but it's because I have severe orthostatic hypotension, another form of dyautonomia, where my BP is too low, and gets really low when I stand (70/45). Hope this helps... Jana

Yes, I have a prescription for it and it does help a little with vertigo. I would give it a try. Best, Jana

I'm so sorry that your doctor gave you such misinformation. That is a complete untruth. Our bodies have energy throughout our lifetimes, and our level of exercise helps determine how much energy you carry forth into your later years. Becoming deconditioned is much worse, and that is really where you would lose energy as time goes on. Do what you can without negative effects, but don't stop moving! Do as much as you're comfortable with, and you should feel better both mentally and physically. Just don't over do...and think about finding another doctor! Wish you the best, Jana

I'm in Arizona, and there are sick people around here, but not as bad as they think it'll get this fall. The flu will definitely make you feel sick and achy all over, unfortunately. Take good care of yourself, drinks lots of fluids, rest as much as you can, get a lot of sleep. Hopefully, it'll pass soon. Wishing you positive energy and thoughts! Best, jana

I would love to participate also, so I'm PM'ing you my address. Thanks for such a wonderful idea. Perhaps this will start other projects where we can raise money for the organization and get a speaker and perhaps a mini-conference some day. Jana

Suzy~ This is great. Thanks for sharing it with everybody. Any plans for another Mayo visit? Jana

Greetings Everyone! Just wanted to share this terrific quote: The fellowship of those who bear the Mark of Pain. Who are the members of this Fellowship? Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; they are united by a secret bond. ~ Albert Schweitzer

Hi Ramakentesh, This might make a good survey...Answers to: 1. It decreases my morning symptoms. I have one cup of coffee first thing when I get up every day. 2. I can't tolerate much Midodrine, so I think it helps lift me out of my fog and give me just a little more energy. Not a big difference, but enough that I keep drinking it. 3. My feet and hands tend to always be cold and bluish/purple. Jana

Dear Bella~ I also get hiccups sometimes that are so loud I can't believe they're coming out of my body! They usually only last for about 10-15 minutes, but I think in my case they're caused by swallowing too much air when I eat...I usually try to hold my breath, and eventually, that usually works (or I pass out, whatever comes first - either way, problem solved!) just joking... Love, Jana

Dear Rene, Are you being good?? And you KNOW what I'm talking about! Love, Jana

I also get frequent migraines, but not always with aura. I certainly can't stand light, noise, or too many people around me. Sometimes I will pass out, sometimes not. I think it's all related to the amount of blood flow, like others have stated on this post. It does all make sense, but it's still scary. I hope you're feeling better about things now. ps...just a gentle reminder, there's no need, and forum moderators generally ask participants to not quote everyone you respond to... Wishing you well, Jana

I've heard that Prozac can help with improving energy levels, therefore also promoting weight loss. It's really an individual thing, though. You have to try meds until you find the best one for you. Good luck and be well! peace, jana

I had a small kidney stone a couple of years ago, and the pain came on very quickly, and was almost unbearable. I was crying so hard I could barely speak. I couldn't stand up or walk, and I had to call the ambulance since I was alone. Didn't they check you for kidney stones? If not, they were irresponsible. I would get in to see a nephrologist as soon as possible to get an ultrasound done of your pelvic region. Or go back to the hospital. I've done that a time or two when I've been in great pain and no one could get me in for a couple of weeks. Please check it out soon, and good luck! Peace, jana

How funny...Here I sit, once again, reading the Forum after a crappy night's sleep and waking up waaay too early and not being able to get back to sleep. Mornings are horrible with a vengeance. There are many of us who are going through the morning yuck with you, so you're certainly not alone. I'm sorry that you're having a really hard time right now. I wish that I could somehow give us all good night's sleep and better mornings. When I'm like this, I try to take a Benadryl or something (Klonopin) that'll help me nap after lunch. So I agree with Firewatcher...be kind to yourself, take a Klonopin, a nap, and be kind to yourself. Peace, Jana

You live in Arkansas, not Arizona, right? If you do live in Arizona, I have some good recommendations for you. Jana

Hi Shoe~ Just a quick note to let you know that the lumbar puncture, while not one of my favorite activities, isn't too horrible. The most important thing to remember is when you get home after it, lay down and rest for at least a couple of hours. Also, a good round or two of Tylenol (or...pick your poison) is in order, because the headache afterwards can be excruciating. Dark room, pain killers, fan on, husband as servant, and a good nap. Almost makes it worth it. Let us know, Jana