potsgirl

I also get some "racing thoughts" during some of my adrenaline surges, and I think that the surges help cause some anxiety. I have also taken Xanax or Klonopin to help with these, but not too often. Still, they really do help. Perhaps if you tried a small dose of Xanax when you get into this state, you can see if it helps. Then you'll know if you're also having some anxiety attacks along with the surges. Good luck!

I also struggle sometimes with talking and get that cough. I also have some trouble finding the right words on days that I'm feeling pretty bad. Sometimes I just have to speak in almost a whisper, and tell my boyfriend I need to just be quiet. He's very understanding, luckily. Sorry I don't have any cures!

I don't know your diagnosis, but if you have POTS or orthostatic hypotension, my doctor recommended Alpha Lipoic Acid. I think there are several people on here that use that, myself included. Licorice root is also recommended by some, but I haven't tried that yet. I tried prescription Florinef and Midodrine, but I didn't tolerate either one well. I'd rather use supplements, anyway. I have POTS/orthostatic intolerance and small fiber neuropathy (constant pain in hands/feet), and my BP gets way too low. The supplements really depend on what health issues you're having. Cheers, Jana

I totally agree...The last time I went to the hospital was when I was taking Coumadin and passed out, hitting my head hard on our tile floor. That time, I really HAD to go. Otherwise, I don't go unless I'm having surgery or have injured myself.

I wasn't sure if I should have voted "lost weight" or "stayed the same" because I really didn't lose that much weight. I started out a little thin, 5' 8" and about 118-120. Now I'm in the 114-118 range. My doctor is concerned and wants me to weigh 125 or so, but I feel healthy at this weight. I know I also have a past eating disorder that is probably rearing it's ugly head with this, too. Do any of the rest of you count your calories/fat? I eat quite a bit more than what the nutritionist says I should, about 1650 cals a day, and I do light to moderate work-outs 3-4 times a week. Treadmill and abdominal work when I'm up to it. The rest of the time I'm usually on my rear end, so I have no idea why I don't weigh quite a bit more!

Hola Comet555, Welcome to the forum! You'll find others on here that have similar problems and I'm sure you've helped some others with your story. You said your BP dropped when you stood up; but did your heart rate go up by at least 30 points? That's a main criteria for POTS. It your BP is dropping a lot, you may also have orthostatic hypotension/intolerance (OI).) I started out with heart problems, too, before I was diagnosed with OI/POTS. I was incredibly fatigued, and the area doctors couldn't figure it out, so I went to Mayo Clinic in Scottsdale, AZ. I live within 4 hours of it...They found that I had dilated cardiomyopathy, bradycardia (very low HR), and congestive heart failure. I ended up getting a pace maker and went on Coumadin for atrial fib. Don't be worried, but make sure you keep on top of checking out your heart by a good cardiologist every year or so - especially since it's in your family. Also, if you're not happy with your medical help, many of us on the forum have finally ended up going to one of the Mayo Clinics, Cleveland Clinic, etc. There are lists of doctors and other info on the front page. Again, welcome. Looking forward to hearing more from you! Cheers, Jana/Potsgirl

My doctor advised my to have water and something salty on my nightstand so I can get some hydration and salt into me before I try to stand up. I also have a cup of coffee or green tea after I eat breakfast. Do any of you also drink some caffeine first thing in the morning? I find it really helps me. Cheers, J

I also have Egg Beaters in the morning and add a lot of salt to them. V-8 occasionally, but I basically just salt my food as heavily as I can without upsetting my stomach. Even the salad I buy from the store I salt instead of using dressing. I try to eat low-fat foods and eat healthily while maintaining my high salt intake. Good luck!

What does your doctor say? They should be giving you that information! I had to have my gallbladder out, so I'm sorry I don't know what's happening in your case. Are they recommending taking our your gallbladder? Cheers, Jana

Hi Rain, I'm sorry that you're having these problems. It's so important to have as much support around you as possible. Do you belong to any clubs? Church? Do you work? Perhaps you could find a friend or two (family?) to help with some of these issues so he doesn't feel so put-upon. I know that there are many on this site that have spouses who don't have supportive husband involvement. I am very lucky in that my husband basically falls over himself to help me when I get off-balance and can hardly walk in the morning. I have found several friends on the forum, and they really help me out with their suggestions. If you'd like to PM me, please feel free. Cheers, Jana

Lieze~ Why do you think you're going to die? As far as I know, no one has ever died of POTS. So sorry you're feeling so badly right now. We need to think of a creative change for you that isn't home or your parents. Would you qualify for home health care coming in during the days/half-days? This has really helped my mom with her Parkinson's. Best wishes to you and God bless, Jana

Looking at her diet, I would think that she would be very dehydrated! Also, it seems her diet is lacking in fruits/veggies and protein. I know, however, that when I really have trouble eating, that whatever I eat (Pot-Tarts, lots of bread), it's at least something. Let us know what the doctor says. I lost about 5 pounds eating the exact same diet plan I had been on before, try to exercise 3 times a week (is she capable of exercise? That might help her appetite). Hope you figure something out! Thinking of you and Kayber.

Gift Creations, What is MVP? I'm feeling very foggy this morning. I have had several heart issues, and it takes quite a bit for the doctors to act on things unless they're pretty severe. It sounds like while you have these heart issues, they're not bad enough to treat. I think it's a good idea to take your echo to another doctor and get another opinion and/or another echo done. No, if it's been two years since your last echo, I would definitely have another echo done! Let us know what you find out. I ended up with a pacemaker and some meds to help my heart. I had bradycardia, cardiomyopathy, congestive heart failure, and then recently, a blood clot in my right atrium. Treatments have been pretty mild. Good luck to you, and PM me if you'd like. Cheers, Jana

I can barely function in the heat. A couple of minutes is enough to do me in. We're supposed to hit 111 degrees today, so I'm staying in!

I'm done for the day by 6 pm! If I try to stay up longer, I hit a 'wall' where I feel extremely sick. I try to push it sometimes, but then the next day I suffer. I get through my days with a nap after lunch and an early bedtime. Then it's up at 5:00...ugh.

They think that the illness that started my dysautonomia was valley fever, which is a fungus that lives in the soil in parts of Arizona. I got sick about 4 months after moving to Tucson. And I'm still here 7 years later because....hmm, why am I still here?

I was diagnosed with bradycardia a year or so before my OI/POTs diagnosis after I wore a Holter Monitor and my HR was in the mid-30s to low 40s. I got a pacemaker and I think it's helped. It certainly gives me peace of mind. My pacer is set to not go below a HR of 60. My BP remains low, sometimes very low, but my HR doubles or goes higher when I stand up. I'm glad I got the pacer.

I've been to both the Mayo Clinic in Rochester and the one in Scottsdale (I live in Tucson now), but saw the same doctor for the neuro portion of my visit. Dr. Goodman is wonderful - he takes his time with you, orders the appropriate tests but not the ones he really doesn't think you need, and is kind and patient. Plus, he'll call you back if you call him about something, usually the same day. I've had positive experiences with the cardiologist and some of the other doctors there, too. You'll find people on the Forum who both like and dislike Mayo. I think a lot of it is that you get a good doctor. I would ask for Dr. G. specifically, and I think your time will be more than well spent. There's a good cafeteria in the clinic, and depending where you stay, lots of food choices around you. We ate breakfast in our room or the cafeteria (very reasonably priced and healthy), and bought food so that we could eat in our room at night....Lean Cuisine, things you could microwave. It's worth it to us to stay where they have suites (PM me if you want to know the name of a great hotel nearby that isn't very expensive but has a mini fridge, microwave, etc). Going to Scottsdale in the summer is the cheapest time to go - the weather gets very hot so hotels are very cheap! Jana

Pretty much everyone gets 'white spots' or lesions in their brain as they age. It's a natural part of aging. I know that when I had an MRI it showed an abnormal amount of 'white ischemic matter' (lesions) in my brain, but there was no big concern about them. One of the larger spots seemed to be from an ischemic stroke that occurred at some point earlier in my life. Now that I have my pacemaker for bradycardia, I can no longer have an MRI done, and wish I could. I have to settle for CT scans, which shows the same kind of situation. To diagnose for MS, your doctor has to confirm 5 points that are the hallmarks of the disease (just like fibromyalgia). So, if you have the white matter, you have to also have these 5 points to have an MS diagnosis. I'm sure you could find these on the internet if you wanted to. I think it might make you feel better. Good luck, and let us know what you find out!

Sorry, but I'm sure you're done with your hearing by now. I hope it all went well. Mine was nerve-wracking, but the judge granted me disability at the end of my trial, which is really quick. I'm hoping that you had the same luck. Let us know!

Thanks to everyone who answered. My boyfriend has been here for all of the seizures, so I know they don't last too long and I would assume they result from my BP dropping too low. Pat57, I can't get onto that site you mentioned, but I'm going to look at cerebral hypoxia and check it out. Thanks again and cheers!

Hello All~ I've recently had an increase in epileptic-like seizures, and am wondering if anyone else has dealt with these. I've had a couple where I'm standing and it feels like a lightning-bolt goes through my head to my feet, and my arms fly out and the rest of my body shakes. Quite frequently, when I'm trying to get up from taking my laying BP/HR it causes quite a severe seizure, and I've started passing out towards the end of them now. They're only 5-30 seconds, but my body really flays out and I don't remember the seizure and I can hardly speak or know where I'm at when I "come to". I see my neurologist at Mayo on July 11th, since he's away for the month of June. Please share your stories or info with me if you have any. Thanks! Cheers, Jana

Hola Everyone~ I've been away from the Forum for the last two weeks or so, moving (yes, it was 100 degrees - yikes!) and then it was up to Mayo in Scottsdale. The blood clot is gone for now, so they're letting me off my Coumadin and re-checking for any further clots that may develop in three months. I don't know about the rest of you, but I try to get most of my medical appointments out of the way over the summer. David, my boyfriend, is a teacher, so it's quite difficult for him to take me to appointments during the school year. I really don't know what I'd do without him. Now we need to work on my worsening dysautonomia/sfn symptoms, and find an effective pain killer. I hope you all are well, and fighting the good fight. I also hope none of you are moving in this heat! Cheers, my friends, Jana

I don't have any answers for you, but am wishing you well. You have all the support in the world right here in the Forum. Learn as much as you can about your condition, and get plenty of rest. Take care, Jana

Another big vote for Dr Goodman in Scottsdale, AZ. I live in Tucson, so luckily it's only a two-hour drive. If he finds anything that he thinks warrants another specialist to check on, he refers you to the appropriate department/doctor. That's how I found out I have a blood clot in the right atrium in my heart. Now they're treating that in the cardiology department. By the way, Goodman started out here in Scottsdale, relocated to Rochester (MN) and then returned to Scottsdale about a year later because his wife couldn't stand the cold!