avais1

Happy Belated Birthday!

Sorry I'm late, but count me in Big Time on this one. Nausea is always my first indicator that my body is going down a pots hole. It is also my number one complaint. I also have that weird "spot", and feel like someone is pressing a button, and I will vomit. I can handle almost everything POTS has to throw at me EXCEPT the nausea. It completely incapacitates me. Compazine has been the only thing that works on me.

I, too, have motility issues, in fact, I am dealing with them again, now. If in a pinch, and unable to get your prescription, Milk of Magnesia works. The extra magnesium helps as well. Oh, the fun!

Hello, Levsin worked wonders for my stomache cramps, but it did make me constipated.

Sorry I am late, but wanted to respond. I do not yet have children, but am 31 and considering it. I don't really have any advice, but thought I would share from my own experiences, and how my views came from them. Please know, this is just my own experience. I am in no way judging others, nor would I think that if someone disagrees with decisions I have made, that they were "wrong". We are all entitled to our own viewpoint. Take what you can from my experience, and if it is all bad, then feel free to "dump it" . I have suffered from dysautonomia "off and on" all of my life. The symptoms became apparent when I was in second grade and started fainting. It was hard, as my teachers and school nurses insisted I was a diabetic, even though repeated testing showed I was not. I always struggled with school attendence, which made teachers dislike me, and it was hard to make friends when "you're never there". I was lonely a lot. The other thing that made it difficult, was my illness tended to "wax and wane", so sometimes I could do things very well, in fact, believe it or not, in 4th, 5th , and 6th grade, I was the schools fastest female runner, and was always the "presidential patch" winner in the fitness tests. I was actually one **** of an athlete. Which is why, when the "spells" hit, nobody could understand how I was completely incapacitated. Of course, given I was in such excellent physical shape for a young girl, I was diagnosed with "nerves" and was "faking for attention". Luckily for me, my mother never believed that. In junior high, I had one of my most embarrassing "pots" experiences (of course I didn't know it was pots then). I was in metal shop, and started feeling the "spell" come on. I knew I had about 3 minutes to make it to the nurse before "blackout" came. I was halfway down the hall, and I was losing it, so I laid down in the middle of the hallway. I was fading in and out of consciousness, while the kids in the next classroom stared at me and laughed. Not one of them offered help, and the teacher came out, looked at me, and CLOSED THE DOOR AND LEFT ME ALONE IN THE HALLWAY! After 5 minutes, I got up, ran to the nurse and collapsed in the bed. My mother was called because 1) I left metal shop without a hall pass 2) I had no pass to be in the nurses office, and did not check in with the nurse (I literally ran to the cot as I was passing out again) 3) They insisted I be screened for drug use. So now, everyone in the school thought I was a drug addict, and being "ultra-thin" didn't help that illusion any. Needless to say, I was angry, hurt, confused, depressed, you name it. It was hard enough being a teenager, let alone deal with this crap. I was crying, alone in my bedroom, when my mother came in. She was crying too. That was when she told me. She told me she had been ill like that when she was a kid, and sometimes even now, and that she was sorry, because she thought I "got this thing" from her. I didn't know what to think, say, or do, so we just sat there, holding on to each other and crying. I have two brothers, and neither one of them have this issue. I was the "lucky one". So there I was, 15 years old, completely wallowing around in my own self pity (unfortunately, I have ALWAYS been good at doing that ). And YES, I sometimes wondered why I was even born. I admit it. And YES, at that time, I was a little angry with my Mother, but that changed over time. I realized I had a decision to make. I was already "here" meaning, "born", so that was a pointless thing to ponder to me. I had to decide what to do NOW. I decided rather than constantly getting "beat up", physically by POTS, mentally by myself and others, and emotionally by everything, I was going to fight back. I became sort of the "class clown" at school. When I would walk to the front because the teacher would call on me, I would joke "Now, you realize if I don't know the answer I am going to faint on you..." and the class, including my teacher, would laugh. I would joke with the choir teacher on days I couldn't stand and sing "Watch out, and don't push me, or you'll see the human domino effect when I faint and take every row out with me." It got so routine that Mr. Phelps would ask me, "Robyn, are we playing dominoes today?" and we'd laugh. I started making friends, in a bizarre way, almost BECAUSE of my illness. I even once faked a faint, for one of my girlfreinds, so I could create a diversion in class so she could run out into the hallway to talk to a cute guy who later became her boyfriend . I still had the illness, but was dealing with it differently. Then, at 20, it hit me hard. I was laid out flat for 5 months, and it took me two full years to recover. It was scary, I thought I was dying, and I still had no dx. My mother was scared she was going to lose me. She felt terrible guilt over the whole ordeal. I had 5 years of a "remission" if you will, and then it hit me again at 28. This time, I was about to become engaged, was talking about starting a family, had started a new job, and was trying to finish my bachelors degree. The spells were horrific. I got ill at my mothers, and was too sick to return home, so she had me for two weeks of ****. She held the cold wash rag to my head (I'm a puker - hooray ). She held my hand, like so many times before. She would comfort me when I asked her if I was dying. She would spoon broth into my mouth, as I was too sick to lift my head. She brought in new pillows and blankets to the bathroom floor for me. She cleaned up my mess when I lost control of my bowels and bladder. And she cried. Not in front of me, but I could tell. She apologized over and over to me, and said if she could go through it for me she would. And I knew that she would. I wasn't angry at her anymore. It wasn't her fault. She suffered just as much as I did, perhaps even more. After this last bout, I finally found Dr. Low at Mayo. I was driving to his office to see if I had just POTS/Partial Dysautonomia, or if I was progressing to PAF or MSA. I remember how blue the sky looked that day. How the grass looked so much greener. How beautiful everything was, and how sad I was that I may not see these things much longer. I thought about all of the people I had loved, and those who had loved me. But most of all, I felt guilty. Guilty for ever thinking about giving up. Guilty for feeling selfish, about complaining "why me" when there was so much I had taken for granted while feeling sorry for myself. Guilty for the blame I laid on others, especially my mother. I realized while at Mayo how so many others had things FAR WORSE than I did. How dare I complain? I realized how much of a fool I had been. A fool for ever "wishing" I had never existed, because here I was at that moment, begging God for another chance at life. I got my wish. I am happy to be here. I love my mother more than ever, and we are closer than ever. We have a stronger bond than most, because WE HAVE gone through **** together. I do not regret her having me. I am happy she did. Now, will I have children? I have not yet decided, but not just because of POTS. I DO NOT want my child to go through this hellish experience. At the same time, I recognize I would not be who I am without it. So, for right now, I am undecided. Anyway, blessings and good health to all of you. I wish you all the best NO MATTER WHAT YOU DECIDE.

Sorry, I am a little late on this. I hope you are doing okay. Good thoughts to you!

Hello, Sorry you are going through this. Medicare is not administered necessarily by the gov't. You have to pick the administrator (meaning healthplan), be it UnitedHealth, BlueCross BlueShield, Aetna, etc. I would suggest contacting the customer service number on the back of the ID card, and asking for help. Also, demand that they send you an SPD (Summary of Plan Details - otherwise known as a benefit book) or a Certificate, explaining the exact benefits of the plan. It should outline deductibles, out of pocket maximums, benefits, etc. Good luck to you, I know it is a pain. Avais

Hi Ernie, Just checking in: Is the potassium working better for you now? Are you okay?

Hello, I just flew to San Francisco last week, and it is a 4 1/2 hour flight for me. I am lucky in that flying has been relatively easy for me (I just started flying again after getting POTS 2 1/2 years ago). However, I did get a really bad POTS attack an hour BEFORE boarding the plane to come back home. I was dehydrated. For me, this is what worked: 1) Lots of salty foods and water the day before I flew 2) Gatorade and salty foods the day of the flight (but not too much food, you don't want post-prandial hypotension) 3) I always sit with my fiance so I can lean on him, or put one leg up on him if I need to (if I am in the aisle seat) 4) For me, I tried a window seat, and it worked a little better for me, as I could lean into the window a swing my legs onto my fiance's lap easier. 5) I do take half of a Klonopin 1/2 hour before take off. It is not for nerves, Klonopin/Xanax can have a calming affect on the ANS, and it seems to help 6) I practice Mindful Meditation, and I swear it works. You can learn the program in Jon Kabat-Zinn's book called "Full Catastrophe Living". I could not have traveled without it. Th ebreathing techniques and body scan techniques saved me. 7) I actually asked a person on the flight if they would mind switching spots with me. They did, and were totally fine with it (bulk-head seats). You could try, the worst they could say is no. 8) I carry emergency short acting beta blockers (propranolol) in case my heart should do a full freak out, but it never has on a plane. 9) I also get up and walk the aisle if I feel okay, because sometimes when I am sitting with my legs up, my circulation gets cut off, and then the POTS hits. Anyway, that is about it. I hope this helps you. Happy Trails!

Ernie, was this something your doc suggested? As you know, blood pressure and heart rate are regulated by the "sodium-potassium" pump, so it is feasible that this pill could make you sick if it threw that balance off. Just a thought.

Oh, this poor woman! Her story sounds all too familiar. Before I was dx'd with dysautonomia, I was a frequent nauseated, vomiting, mess. From age 20 to 26, I never made it past 115 pounds, size 0-2, and it was not because I was anorexic. I knew that my GI system was malfunctioning, but every GI test I took came back "normal". All they found was that I had a redundant colon, and that I developed GERD from a small hiatal hernia I developed from vomiting so hard. Finally, I met a wonderful GI doc, who guessed that I may have an autonomic disorder. This put me on the path, and eventually to Dr. Low, and we all know the rest from here. For me, I get severely nauseated even when I am slightly dehydrated. Also, if I am out in very humid air, even if it is cool, my body has a hard time adjusting the water balance, and here comes nausea. Also, when a person is too thin, they tend to get hypovolemic, which makes the whole picture worse, as we all know . Anyway, she is lucky she moved in next to you. You are always so good with giving advice and letting people know they are not alone. You have probably saved her sanity already .

My positive thoughts and energies are headed your way. On the brighter side, I have two friends who have battled breast cancer, and both have won so far. POTS will make things more difficult, but not impossible. You can do it, and we will be here with you.

Bump - everyone all right?

Hi everyone, As you know, I have written to many of you about flying with POTS. I used to fly all of the time before I got sick, but have not since getting hit with POTS in February of 2003. Also, with the POTS, came an extreme sensitivity to motion sickness. Nothing like the good 'ole double whammy. I have almost booked a couple of flights, only to decide not to. This time, I booked it. I live in Minneapolis, and I thought I would try a short hop to Chicago, as it is only about an hour and a half away. The day I was set to fly, I just could not stop panicking. I barely made it to the airport, and I thought I would faint. I almost threw up, I had worked myself up so much. I finally turned to my fiance in tears, and told him I couldn't do it. I was just too terrified of the thought of having a POTS attack, or having my heart flip out, our throwing up and being incapacitated on the plane. We ended up going downstairs, and renting a car, and we drove 6 1/2 hours instead. I was sick the whole way, but I had already booked the hotel rooms, and I didn't want to ruin this for my fiance. He was wonderful, he went through this whole ordeal with me. We were in Chicago, and I was sick. However, the next day, we made it to the Taste of Chicago, and we made it to the fireworks on Navy Pier. It was great! Then the next day, it was time to go home. Fly or drive? I was too tired and worn out to make another drive. It took every ounce of my courage, but I got on that plane. The first thing I saw was how tightly packed it all was. I blocked that out of my mind, and concentrated on finding my seat. My fiance held my hand, and I kept thinking about all of you here at Dinet. I decided it was my turn to "Take One for the Team". Here is exactly what happened: As the plane first lurched back from the gate, I got a little dizzy and went on alert, as I had felt motion. What helped, was I looked out the window, so I could see which direction we were moving so my eyes, brain, and ears were all in agreement that we were going backwards. No motion sickness. Then we taxied down the runway, and I figured that since we were literally bouncing all over the runway, the flight couldn't get much bumpier! Then it was time for take off. I stared my head straight ahead, and kept it still, trying to keep my head looking in the same direction as the motion. I don't know why this works, but it does. Then we took off. I felt the motion, but it wasn't bad at all. It was not as bad as my mind had made it out to be. After about two minutes, I was allowed to turn on my CD player, and I listened to some good music. After 5 more minutes, I was able to turn on my laptop and watch a movie. We hit some turbulance from a thunderstorm, but my body handled it better than my mind gave it credit for. Before I knew it, we were getting ready to land. The flight, basically, WAS A PIECE OF CAKE!!!! It didn't trigger POTS at all. Panic maybe, but not POTS. Anyway, sorry this is so long, I just wanted to share for those of you out there who were terrified like me. I hope this will help you. And don't beat yourself up if you mentally melt down like I did. You can always try again another day, like I did, and be successful!

Hi Julia, Don't forget, the ANS becomes supersensitized when under extreme stress, and you definitely have been under extreme stress. Your nerves are firing impulses because they feel, basically, ragged right now. It is OKAY to feel how you feel right now. Your body is still reacting to all of these strange things. You feel you are in danger, and your body is reacting as though you are running from a tiger. It is OKAY that your nerves are completely frazzled, the nerves to your stomache, the nerves to your heart, the nerves to everything. After what you have been through, your body is still responding. With our delicate systems, it takes longer to "reset" back to normal. But you will, I promise. There is no shame in seeking help for a tired mind. I have done it many times. It would be worse for someone to NOT seek help, as then they are living in denial, and then help will never arrive. I applaud you for going forward to get some help. That in and of itself takes a lot of courage, and you should pat yourself on the back for recognizing when you are drowning. Many people do not. Good for you! I promise the sun will come out tomorrow!

I am so sorry you had to go through this, but thank you for sharing! I laughed out loud, and I really needed that! See, if there isn't an obvious diagnosis, the docs will always go for a mental one, as they need to have a dx code on a claim form in order to get paid for the service. They don't have a dx code for "the doctor just doesn't know" so they pick one in the mental health category because that is subjective, and then they get paid. Unfortunate, but true.

Hi Sue, I am supersensitive to cold meds, and can't take regular Sudafed, etc. But I did find one thing that worked or me. It is Childrens Triaminic, the orange flavored one, labeled cold & allergy. The dosage is 2 teaspoons, but I only took one, as there is 15mg of sudafed in it, but that is really small, and even I could handle it. It also has 1 mg of antihistimaine, so it made me a little drowsy, but it did help me make it through the tough times of the cold. It didn't POTS me out personally, don't know what it would do with you, but this is what worked with me. I took a dose less than a 6 year old, but it worked .

Hey EM, You can always have your doc say that he gave you samples of other MA covered remedies, but that you failed on all of them, so you HAVE TO HAVE the Allegra. Then MA won't turn you down, nor make you wait 30 days. I used to work for Blue Cross, and we administered MA, and we made the exception all of the time.

Hello, Sorry I am late in responding on this one. I just want to reiterate what MomtoJulianna said, SSRI's for me have helped tremendously. I suffer from hyperadrenergic POTS, which means I "spillover" norepinepherine (adrenaline) about three times as much as a normal person. Needless to say, when I panic, it is MAJOR, meaning I can panic myself into incapacitation due to all of the lovely norepinepherine I can generate Anyway, I started Lexapro 5 mg and have been on it for two years. Getting on it was one of the worst hells of my life, for two weeks, I was a mess. But after that, I was able to get some of my life back. If you do start one, try to stick it out, no matter how hard. It had helped me tremendously. Good luck to you, and know that you aren't alone on this one.

Hi there, So sorry you and your husband are going through this. This has happened to me once. I was sick in the middle of the night, and I was having (sorry to be graphic, but there is no other way) a bowel movement and getting presyncope at the same time. I fainted while having the movement, and I lost control of my bowels right before and during my pass out. I was told that this stems from the Vaso-Vagal response, as the Vagus nerve plays a part in both the syncope, as well as GI system. During a time of crisis, the Vagus will move everything to try and restore homeostasis. Unfortunately, there is no way to avoid this when it happens. Some things that have worked for me are to increase the fiber, and keep the tract as clear as possible. Also, if one is straining to hard to have a movement, that can easily bring on syncope, as that is basically the Valsalva Manuvoer. As for the urinary issues, I have to get up and go sometimes 8 times a night, full bladder everytime. Dr. Low advised that this is part of the autonomic imbalance, and that the nerves are getting a mixed signal. I was told to try and practice letting the stream go, and then trying to stop it intermittently. I also avoid drinking anything 1 hour before bedtime. Good luck with everything, I hope you get some more answers.

Congratulations! What a beautiful baby. Way to go Mom!

I found a really good one that has helped me and my colleagues: Full Catastrophe Living by Jon Kabat-Zinn It includes the full 8 week program for stress reduction (due to stress, pain, illness) that is taught by the University of Massachusettes Medical Center. Great book, wonderful techniques.

Hi Ernie, I don't have much to add, I just wanted to send you my sympathies and condolences on your loss. Thinking of you - Avais

Have you been to the NDRF website? www.ndrf.org. They might have info in addition to the info here on Dinet.

Hi all, I am catching up on the forum, and have read many posts lately about POTS causing arrythmias, people dying, etc. I wanted to add in my two cents, but on a fresh thread designated to this topic. For those of you who are already familiar with all of this, feel free to skip this post. First, and foremost, PLEASE STOP SCARING YOURSELVES! I, too, am a healthcare professional, but I will not identify which one (nurse, doctor, researcher, PhD, etc.) as I WILL NOT give out any medical advice. We should all be discussing our care plans with our own trusted medical team, and for those of you who do not have one, I urge you to find one. I will tell you that people (and this includes "normal" people) have what is called "arrythmias" all of the time. Some people can notice the slightest change in heart rate, others don't notice at all. There are many different types of arrythmia, and I can tell you this (THE ARRYTHMIAS THAT ARE PRODUCED IN CONJUNCTION WITH THE POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME, PROVIDED THERE IS NOT AN UNDERLYING HEART OR OTHER DYNAMIC CONDITION, ARE GENERALLY BENIGN). That means they are NOT LIFE THREATENING. The physicians are not trying to "hide" anything from you. They are trying to get you to STOP SCARING THE **** OUT OF YOURSELF for unneccesary reasons. For those of you who keep scouring the internet, reading stories about some person who died from a heart arrythmia: Do people die from it? Yes. Does it mean you will? No. Do not tie yourself up into a ball of anxiety, measuring every heartbeat, breath, etc. That is what physicians try to avoid having you do. It greatly affects your quality of life, and it adds additional stress, which is not good for your heart . Take a deep breath! Or a shallow one ! As long as you are still here and breathing, that is what matters! Stop scaring yourselves. The mind can be a much bigger concern than you heart. Speaking of the heart, it is an amazing muscle. You would be surprised at how much it can take. If you can do some research WITHOUT SCARING YOURSELF, I highly recommend it. Knowledge can be wonderful, IF USED IN THE RIGHT WAY. Write down questions, your fears, and take them to the physician you trust, and discuss them. I guarantee you that any good physician will want to listen to you, and will be open and honest (I know finding a good one is hard, but they ARE out there). Lastly, finding a counselor who is trained in helping people with chronic illness can be a great help. They are trained in helping people deal with the anxiety and depression that goes hand in hand with a chronic illness. I hope this message has helped those of you who have needed it. You are not alone, and you do have options.