avais1

Oh, I am laughing so hard at the tombstone thing . When I was in Key West (before POTS obviously, as it has been rated the most humid city in the U.S.) there REALLY IS a tombstone in the cemetary that says "I TOLD YOU I WAS SICK". It belonged to a woman that the locals had written off as a hypochondriac. I guess she showed them .

For me, scuba diver in the carribean. Can you imagine having an attack under the water? And when you leave the water, it's 90 degrees with 90% humidity. I'd drop over!

Mary, so sorry to hear of your horrible ordeal! I am glad you are feeling a little better now. I, too, avoid the ER like the plague. The last time I was in one, I was sure they were going to kill me. I had a bout of what I thought was a severe IBS attack, and all I wanted was an anti-nausea drug. Instead, they pumped me full of Morphine!! You know what the side effect of Morphine is? NAUSEA! I told my fiance to get me out of there before they killed me. My heart goes out to you - I have had 5 in my lifetime, and how you all hang on is beyond me, I'd never have the strength! A question for you: Have any of you tried placing an ice cube on the carotid artery while you are having a migraine? A nurse friend of mine insists that it works, because it causes the blood vessels to constrict. Just curious if you have tried it?

Hey EarthMother! It is good to hear from you. I haven't seen you post much last month. I know exactly how you feel - I have had many days like that. It is hard not to lose heart at times. However, you did pull your strength together to see the performance, and my hat is off to you for that, as I know that takes intense mental control and stamina to do so. Give yourself a pat on the back for that - a "normal" person would have collapsed and run to the ER crying ! But not us pros! You are in my thoughts, hang in there. We will all make it someday.

Hello! I stayed at the Kahler hotel. It is connected to Mayo through the underground tunnels, which reduced walking considerably. My room had microwave, fridge, coffee maker, etc. If you need a full kitchen, just tell them. Also, when looking for a room MAKE SURE TO TELL THE HOTEL YOU ARE A MAYO PATIENT! They offer special discounts to us, better than the AAA I had. My room was great, and I got it for $69 a night as I was a patient, (they were normally $110).

You can also switch over to Lexapro, Celexa's sister. They are virtually identical, but the dosing is different.

That poor dear. Reading what her Mom wrote brought back my own memories of having to lie immobilized, or have a spell. I will send a note to her. Thank you for posting the information.

Hi everyone, Thank you all so very much for your candid, heartfelt, and honest answers. I can't tell you how much it has helped me. My doctor is phoning in the script for the xanax and scopalomine (I struggle with horrible motion sickness, always have). I am taking a "trial run" short trip on March 3rd. The Xanax will be for my intense travel anxiety, and I do mean intense. When POTS first hit me, I was traveling in England. When it hit me again, I was in Bermuda, and then again in Key West. I relate those memories, and have not traveled since 2002, when Dr. Low finally told me what I had. As such, my poor fiance has also not traveled since 2002. I have the worst case of cabin fever imaginable, and it is finally outweighing my fear. Not to mention the look of disappointment my fiance tries to hide when I "meltdown" when we travel more than 2 hours from home. He has been so kind, but being bound to this city is not fair to him. I have to do this, for us. For me. Bless you all, and thank you all, for giving me the courage to go forward. I'll let you know how it goes!

Thank you all very much for the replies. I don't suffer form a high resting cardiac rate, but I was hooked up to the tilt table when Dr. Low recorded a panic attack that mimicked a POTS attack. My heart shot to 170 (I was lying down when it happened) and it passed in about 4 minutes. He said it was panic, and that the POTS and panic can sometimes go hand in hand. I have a flight scheduled for next month, and I have not flown since 2003 when I got sick again. I think I can handle the POTS on the plane, but I do not think I can mentally control the anxiety during take off, and my doctor agrees. That is why I was asking about Xanax, as hopefully it can get me through the flight. I too hate taking meds, which is why I was asking all of you for your advice. I only take lexapro 5 mg for POTS and Anxiety. It works, but during a panic, I need something extra, and FAST. Thank you all so much for your answers, I really appreciate that you shared something so personal with me.

My gosh, you people! I am laughing so hard right now, I have tears coming down my face! I'll share one that involves my late beloved cat. We had just come back from a week long vacation, and my mother had accidentally locked my cat away from his litter box. However, my cat was truly exceptional, and he went in the bathtub. What a good boy! My mother cleaned up the mess, and praised the cat. Later that evening, I was passing out on the bathroom floor. I woke up on the floor, but was too nauseated to move. My cat came in to check on me, blessed beast that he was, and then went into my mom's room and "yowled" loudly to get her out of bed, as the cat knew the bathroom floor was an unusual place for me to be in the middle of the night. Anyway, I was parked for the night on the bathroom floor. During moments of lucidity, I thought I could smell a faint glimpse of cat dung (NOT FUN when you are already nauseated!) I looked around, but didn't find anything. At any rate, I was camped out on the bathroom floor for another 6 days, and my mother COULD NOT find where the smell was coming from. On day 7, I attempted to get up, but fainted again, and landed on my little brothers cap that had been laying on the floor for a week. I then flipped the cap OVER, and there was the culprit! My cat had always hated my little brother, as the cat was there first before the brat was born. The cat went to the bathroom in the bathtub, wiped his butt on my brothers cap, AND THEN FLIPPED IT OVER HOPING NICK WOULD PUT IT ON HIS HEAD!!!!! Now that's a smart cat He stayed with me for all 27 days I lived on the bathroom floor, and was with me for 20 years.

Thank you for your honest reply. I appreciate your candor. I know this may be sensitive for some of you, but I do need to know. I'll tell you a little bit more info as well, and maybe this will help. I had taken 0.5 mg of Klonopin in the past, only as prescribed by my doc. I didn't even use the whole bottle. I do have legitimate anxiety/panic disorder, and have been cleared for appropriate use of anti-anxiety meds by my psychologist and physician. Per Dr. Low, due to the tyoe of POTS I have, it is very difficult for me as POTS will set off my anxiety, and anxiety can set off my POTS. That great "chicken or the egg" debate. The Klonopin worked well, but left me too groggy, and was too long acting. I am looking for something that wears off faster than the Klonopin, and was told that Xanax might be better. I haven't taken any benzos in about 2 years, as I don't prefer the after affects. I also haven't taken any since POTS came back in two years ago, so am unsure what to expect now. Thank you for any responses. I really am grateful, and know that I am not here judging anyone, I just need some honest answers. Thank you!

Wow, you poor girl! I haven't been to England since 1997, but there was a medical inpatient university right behind where I stayed in London, in Bloomsbury near Russell Square. Not sure if they can help. The only suggestion I can make, is have you tried "consolidating" doctors? Do all eight know each other? Do all of the docs know everything you are taking? That is an awful lot of medication for one body to filter. Also, I would not quit anything unless supervised by a physician. I think your first step should be to pick the physician you trust the most, bring in a list of all of the other physicians, and medications you are taking, and go from there. Good luck to you!

Hello, and welcome! I am so sorry to hear you are not feeling well. I have intestinal motility issues that come and go, but nothing as severe as yours. One thing I can definitely empathize with is the nausea. When my dysautonomia desides to kick me in the gut, I fluctuate between having no motility (lovely paralytic ileus) or hypermotility (what my doc calls a warzone, because this is what it sounded like to her in her stethoscope) . The nausea is the worst symptom of any of it for me. These are the only things I have found that help: 1) Compazine 2) Ensure, broth, Pedialyte 3) Toast and crackers 4) Ginger Trips made by SolaRay (at most whole foods stores) 5) Unisom (a trick I learned from a pregnant friend) For energy, I try Green Tea, but I avoid Ginseng as it races my heart. Also, cooking something with a little butter. Butter is a fat, and has a lot of energy packed into it. Just one pat will help. Otherwise, Extra Virgin Olive Oil. Also, the most important enery motivator for me is MUSIC. I put on songs that I used to dance to, and pretty soon I get the urge! I may not make it up, but I start wiggling in my chair until I can make it to my feet! Anyway, good luck to you, and know that you are not alone.

Hello everyone! I hope you are all doing well today. I have another question for you (yes, again)! Xanax - for those of you who have the hyperadrenergic POTS and/or anxiety issues along with your POTS, and you have taken Xanax, has it worked for you? I know about the downfalls of this drug (addiction, etc), but I need to know for those of you who take it correctly (and I know WE all do), does it work for you? The reason I ask, is I struggle with the hyperadrenergic POTS, with norepinepherine shooting through the roof. This also sometimes sets off panic attacks for me. Dr. Low had me try phenobarbital, but it made me sicker than a dog. I am looking for an alternative. I need something that acts fast, and can calm me down until the storm passes. Thanks much!

Hello all, This is a subject we all face. I asked Brett, my fiance, for some tips from the "healthy guy" side of the fence. His ideas are: 1) Find things that you CAN do together, or else you can drift apart 2) Get any underlying psychological issues addressed (for me it is ANXIETY) 3) Couples counseling 4) Refuse to let this condition define you

Hi All, I am a weight fluctuator. I have gone from 116 to 145 in as little as three months. I have gone from 145 back down to 112 in as little as 30 days. I am 5'3", and yes, everyone can see the fluctuations. I have to keep two closets full of clothes ranging from size 2 to 10, because on any given day, I have no idea how anything will fit. No, I do not diet, I do watch what I eat, but I really do think I am one of those "freak" people who really doesn't have much control over the weight. My body seems to be searching for a "set point", and I pray it won't set on the 145!

Call the phone number for customer service (usually on the back of your insurance card) and ask. If you have DME coverage (Durable Medical Equipment) some plans will cover this as well. But get clarification before you buy it.

Tearose, I am glad for you ! I am happy your heart is better - hooray! Just in time for valentines. On a side note, you all made me so hungry, I grabbed what I had in my baking cupboard and made a half batch of chocolate chip oatmeal cookies. I have eaten 4 of them!!! Thanks people !

Thanks for the inspiration Tea Rose! I am going to give it a whirl tomorrow too.

You poor thing! I have been reading all of the posts. What a hard thing to go through. A few years ago, I went through something similar. You are a strong person from what I gather from the posts, but even the strong need help and support. We are here for you. My prayers and thoughts are with you tonight. Keep us posted, and God Bless you and your family.

I called their phone number, and it has been disconnected. I am scarerd that they no longer exist.

One thing about my Mayo experiences is that I informed the scheduling desk, and Dr. Low, that whatever tests they needed to do was fine, but that I could only give them 2 days or I'd be fired from my job. I'm not sure how they did it, but they crammed all tests into those two days and got me back out the door. So for anyone else on a time constraint, give it a try.

Good for you! Remember, they wouldn't have a job without us . Don't EVER feel "pushy" for asking for more information, better explanations, etc. You DESERVE to have that as a patient. Let us know how it goes. I am thinking of you, fingers crossed.

You know, I don't think they measured my serotonin levels ! I think they were just desperate to try something. One thing about my Mayo experiences is that I informed the scheduling desk, and Dr. Low, that whatever tests they needed to do was fine, but that I could only give them 2 days or I'd be fired from my job. I'm not sure how they did it, but they crammed all tests into those two days and got me back out the door. So for anyone else on a time constraint, give it a try.

Well, maybe you can make it? I set the date out quite a ways, it is April 29th of 2006. I figure if I can't build some stamina between now and then, I'll wheelchair myself down the aisle! But really, I wanted to finish my bachelors degree (due to graduate in December) before I got married. I have been working on it for 10 years plus, and I just want to get it done. Since I was too weak to work full time, and go to school like I used too, I had to give my job up. But I am a full time student, which still keeps me plenty busy. If any of you are going to the Mayo Clinic around that date range, pop up to St. Paul and come to the wedding! But....BRING YOUR DANCING SHOES!!!!