deucykub

Nina just put into much, much nicer words what I have been thinking since I read the post on your PTs theory and since seeing that god-awful Oprah episode on "The Secret" (well, half of it - I turned that bunk off). (I think Oprah forgot to take her discernment pills this month - I mean... really, what nonsense! Let's all believe an egocentric woman with no formal training who writes a book - and gets rich off of other's suffering - about controlling our universe through an unscientific LAW??? Can I have some of what she's smoking, cause maybe it will make me feel better, too! ) So, I'll just keep my mouth shut (can you believe this is me keeping my mouth shut? ) and say that I agree with Nina, 100%. It's so easy to let people lead us with non-scientific theories that put us in control because maybe, just maybe, we can think our way out of feeling so awful. Please don't let anyone ever deceive you into believing this is your own fault, because that is the by-product of those types of theories. People who espouse such theories, particularly those in the medical field, to those dealing with chronic illness are irresponsible and thoughtless. Okay, I said a little more, but really, I'll zip my lip now... Deucykub

Oh, that is such wonderful news! Congratulations on such a great hearing. What a relief to know you don't need to worry about that anymore. I am so HAPPY for you!

Hi, LilySnick: Welcome to our little niche on the net. I really don't have any legal or procedural advice for you because it sounds as though you are taking a really thorough approach to dealing with your school, but you have my total empathy. I've been where you are right now. I became chronically ill at the age of 17 with, at the time, an unknown illness that caused horrible back pain and debilitating fatigue. It wasn't until four years later that a doctor finally diagnosed it (Fibromyalgia). I dealt with the same kind of disbelief from my friends and teachers, then, too. I finished my senior year through the homebound program and tried to keep up with my music (singing), but it took all of my energy to do that one homebound class and keep up with practices. My choir director, who was once my mentor and friend, turned on me. I broke school records for solo competitions and was courted by top-notch college music programs; I was even selected in high school as one of 18 high school and college women across the state of Florida for an honor choir. But my director forcibly excluded me from singing with the school's ensemble group at competitions and refused to allow me to sing at my graduation (the only graduation in my high school career where I did not sing) because he thought I was "faking it." One of my teachers who didn't judge me and believed I was really sick talked with my parents and told them the one thing that rescued my senior year. That was "just because your daughter is sick doesn't mean she has to stop living." At the time, my parents were "old school," believing that if you are too sick to go to school, then you are too sick to leave home. After that, my parents started to allow me to go out with friends as I was able (which required a lot less energy than a full school day!). That is so important - please be sure to keep having fun. Your emotional health is just as important as your physical health. Fifteen years later (wow, that makes me sound old, lol), I can tell you that I got through that period of illness in my life. I finished not only my bachelor's degree (even though it took me seven years), but I now hold a master's degree. Singing didn't turn out to be the right fit for me, because the degree required me to be on campus every single day, but I found a major that I really enjoyed where I could take classes two or three days a week! I love my career, am happily married, and thrive in life. There is hope, and you can make it through this. You'll find that those people who believe in you will give you strength on the days you don't have any left. Ignore those that don't believe in you - they are unhappy in their own lives and want to direct their own misery into your life. Don't give them that power. The fact that you have developed POTS at such a young age may be actually really good news! Studies show that adolescents have a much greater chance of this illness just going away in their early twenties. I have POTS, too; although, I didn't get it until just last year, but the strength I gained dealing with chronic illness in high school is still there today. Living with chronic illness will make you a stronger person than others your own age, and once you are through this, you'll find yourself less hampered by the self-doubts those around you suffer from because you'll KNOW how easy most challenges are compared to the chronic illness you lived with and conquered. Well, I didn't mean to write a novel! Know you are not alone - you can live through and thrive through this. If you ever want to chat, feel free to PM me. Stay strong and believe in yourself. Deucykub

Hi, Julia: Welcome to the forum and good luck with your new job. You should be proud - that's quite an accomplishment! Deucykub

Dumb luck combined with clicking and praying, lol. The html full text version led to a registration link, but when I clicked on the .pdf version it went right through!

This looks like a really interesting article. Thanks so much for sharing it! I think this is the link to the full original content: http://www.mayoclinicproceedings.com/pdf%2...%2F8203a5%2Epdf Deucykub

Hi, Helane: Welcome to the group! I'm so glad to hear that your symptoms have been pretty manageable for you. Many people on this forum have been told that their illness was psychological, but later, doctors that took the time found the physiological causes. Know that you are among friends who understand and believe you. I'm afraid I don't know any Polish, so pretend I'm putting a very cool Polish sign off right here. Deucykub

Hi, Lisa: I'm short of breath any time I exert myself, which means moving at all in any position. I also have asthma (at least that's what the doctors say), but the shortness of breath is there when my asthma is fine. My Electro-Physiologist said the shortness of breath is caused by the tachycardia. When your heart speeds up, your rate of breathing also increases, and you feel short of breath. That being said - if this is a new symptom for you, you should definitely tell a doctor. I'm seeing a second pulmonologist in April to be sure that all bases are covered and to see if he can figure out where my asthma and POTS overlap. Please be sure to ask a doctor about this if it is new for you. Take care! Deucykub

Hi, Flop: What is the latest status on your using a wheelchair? I've been wanting to respond to this post since it started, but a POTS flare made it too difficult to get the words from my head to the page...argh. I hope that you are feeling better after your two "flops." I really feel for you. I've only actually fainted once, and it was miserable. Typically, my body gives me lots of warning signs to sit before it will take care of things on its own. Have you tried working out a compromise with your Cardiologist? Boy, do I understand needing to play the balancing act with doctors. Sometimes they just think unreasonable things, even if they are good doctors. I guess it's the whole "doctors are human" thing. It sounds like you have a good doctor who is willing to work with you, but he's concerned about your long-term health too and may be a bit misdirected in this area. Anyway, some thoughts on a compromise might be (1) telling him that you would leave the chair at work (therefore, cannot use it outside the office), (2) being willing to try physical therapy to compensate for standing less through the day, or (3) trying a trial basis where he could monitor your conditioning closely while you use the chair. If he went for the latter, he might be the first to publish a paper on the use of wheelchairs and its effect on conditioning in POTS! Sometimes doctors are willing to negotiate a bit, and if they know you are willing to work with them, they might give more in response to your needs. By all means though, don't let something like needing a wheelchair get in the way of your life goals. Those are just too important! I hope that you are feeling much better. Take care! Deucykub

Hi, Tearose! It's so wonderful to hear from you! I just woke up after a 5 hour nap and am feeling a little more human. Dr. Bonyhay is redesigning some of the protocols for those (like me) who can only make the trip once. The word is soon, though, before the end of April but likely sooner. I'll be sure to let you know. Thank you for asking. Deucykub

Hi, everyone: Thank you so much for all of your replies. I want to take the time to respond to each of you, but I am not in the best of health these past couple of weeks. However, I did just hear back from Dr. Bonyhay, and he has given me the okay to pass along his contact information to anyone interested in participating in the study. If you would like his contact information, please feel free to PM me. I have decided to participate after talking to all of you, my other doctors, and my family. It's worth the risk to have even the chance of learning more and feeling better again. Thank you, thank you, THANK YOU for all of your input. You guys are the greatest! Take care! Deucykub

Hi, everyone: I've been lurking the forums for the past two weeks, wanting to write replies but not finding the energy to do so. For those who have PMed me or replied to the research thread, I'm sorry I haven't been able to reply yet. As for the research, I'm going to do it. I have a question emailed to Dr. Bonyhay to see if they are looking for more participants and will let you know as soon as I do, for those who asked. Cardiactec (sp?), have you heard anything from your contact there? Today is the day I'm not permitted to work from home, so I tried coloring my hair because I needed it so desperately. Not my best move - heart rate stayed at around 140-150 and then pouring a bowl of cereal it hit 176. Dumb, dumb, dumb. Even more wiped out now. Mom and Dad were in town for a week. It was wonderful - missed them so much and really couldn't travel to visit. Left me in quite a "POTS hole" after, though, even with trying to not push myself. Oh well, such is the life. It was worth it to get Mom and Dad hugs. I hope you are all having a "good" day. Will post more soon. Deucykub

Hi, Danelle: I don't have any personal experience with chemo, but I wanted to join the others in wishing you the very best. You will be in my thoughts and prayers this week for peace and on Monday during your surgery. POTS is enough for anyone to live with; I'm so sorry you were dealt this double blow. Deucykub

Oh boy, Amby, can I ever relate! I don't know if it's going to be like this always, but I really hope not! Here's my latest: I fed my cat. I didn't do cartwheels to feed my cat. I didn't run a mile to feed my cat. I didn't hold said cat over my head (he's a big, fat ol' cat) and do an Irish jig to feed my cat. I simply stood up, put the food in the bowl, and fed the confounded cat. Two minutes tops and I felt horrible! Checked the vitals - BP: 84/53; HR: 145. Phew... guess we got our exercise for the day!

Hi, Bri: I never thought I'd see myself say this, but... here's hoping it's only POTS! The nausea can be so miserable as can the dizziness. I usually get my really bad bouts of nausea in the middle of the night - great for sleeping and feeling decent the next day! I hope you get over these symptoms and feel better really soon. Lots of rest and hugs to you! Deucykub

Hi, Melissa: Thank you so much for sharing a bit of your precious energy with me, as well as your insight. It is so great to see you on these forums again and to know that you are back home surrounded by friends and family. I'm almost positive that work will be more difficult for a while if I do the research, but then, the other side of me wonders how much really could I lose if I'm only working 3 hours a day, 3 days a week. The other side of me (yes, I have three sides ) couldn't care less at this point about work because I am just furious at management for my current situation, which is such a mess. My attitude toward research mirrors yours. I'd like to get some understanding of my body, because I'm the type of person who, when faced with a problem, will study, research, test, and try until the problem gets solved. I have to be in a state of action. Plus, the benefit to all of us as we choose to participate will one day be a discovery that will help someone, somewhere feel better. My coping strategy throughout life has been, when faced with a traumatic experience, good could come of it through using that experience to help someone else, and that spills over into this decision, too. You remain in my prayers for peace, joy, and recovery. Deucykub

Hi, Cardiactec, LukkyChrm, and Amby: Thanks for your input and advice! This really is a tough one. My instincts say go for it, but I don't know how this will affect my already declining ability to work. Cardiactec, it really is a small world! I met Dr. Bonyhay when I was there in November and have emailed back and forth with him a few times. He seemed really great, and it's good to know from your experience that is indeed the case! Your description of the mental test had me laughing to the point of tears. Maybe it won't be so bad if they aren't expecting accuracy, lol. They'll be doing that needle in the nerve thing, too. That didn't sound particularly pleasant! Looking at your heart rates (which are always so crazy high, you poor thing), they make sense to me. Your lowest heart rate was basically when exposed to discomfort/pain. POTS folk are some of the toughest people I've ever met when it comes to bearing pain and discomfort. I think it reflected your best tolerance was to those external factors. It says to me that our systems are not overreacting to physical stressors. The second highest heart rate was to mental stressors, which would reflect the research that shows that vasculature expands when a person concentrates, and that for us is a very bad thing. That would support many statements by people with POTS that they become symptomatic when they are in a situation that requires mental energy. Then, finally, the highest heart rate was when they (if I understand this correctly) pulled the blood into the legs through negative pressure, which would be closest to of the three to orthostasis, our #1 enemy. What do you think? I'm sure you've thought about this a lot! I haven't gotten the call from Dr. Bonyhay yet today, but my brain is fried, so I kind of hope he forgets until tomorrow! Hope everyone is having a "good" day! Deucykub

Hi, Amby: I can relate to the husband issues. Mine wasn't so much cold as skeptical, which was so frustrating. He gets it now, though! There's hope. Now he is always watching and tries to help. If I take the last sip of my salty concoction, he jumps up and asks, "Do you want more 'juice' (as he calls it, lol)?" He's so much more supportive now, walks a little more slowly when I am with him, and tries to anticipate my needs. Here's what I did... and it worked! I learned as much as I could about POTS/dysautonomia and its mechanisms. Then, when I was symptomatic I tried to blend in a little of the "why" with the "how" I was feeling when I talked to my husband. That way he could understand why I looked fine but felt so awful. I also related stories in the news to him and explained how they were similar to what I am going through. Two examples: 1. The Wiggles, lead singer/dancer quit the group because of orthostatic intolerance, much like if not exactly POTS. It helped him to understand that if someone successful and motivated could be knocked down with this, then I could still be the motivated person I was in spirit and yet struggle to work because of illness. 2. My Dad related a story from the Kennedy Space Center (where he worked until retirement) where a man, harnessed for safety, fell off the Vehicle Assembly Building (the HUGE grey building with the American flag and NASA symbol painted on the side, shown in all the shuttle coverage). When they finally reached the man, dangling about 150 feet off the ground, they found him unconscious, which was not supposed to happen. They later had a volunteer test the harness, and sure enough, he fell unconscious as well. They determined that the harness around his leg was cutting off his blood flow to his brain. I used this story to explain how the blood pooling in POTS reduces blood flow to the brain. It helped him (and my Dad) to have this physical accident related to what is happening (invisible to the outside world) inside of me. I didn't hit him over the head with it... just small doses. Over time he came to understand and empathize more and more. Something I always reminded myself during our transition stage (from happy, healthy couple to a couple living with POTS) is that he was experiencing a real loss, too. He might not have the illness, but he was now living with someone who did. That meant a lot of changes were happening in his life, and he needed time to adjust. Your husband may just need some time, too, and he will probably become more empathetic as he understands more. If he doesn't, you'll always have your POTSy-go-lucky family here to help you through. Hang in there - it gets better! Sorry to ramble on... Deucykub

"Perceptive" works, too. I'm just totally backward when it comes to perceiving what my body says. All I hear is - tired! tired! tired! please sleep! lol Tearose, I've often thought the same as you - once you've had and known about having a chronic illness long enough, there is a numbness that develops to recognizing symptoms, but the effects are still the same. When it comes to knowing my body, I'm pretty much dumb as a post.

Hi, Tearose and Cardiactec: Thank you for your replies! The research will be conducted at the Beth Israel Deaconess Medical Center/Harvard Medical School (wasn't sure if this was okay to say ). That's the same place that is directing my treatment for POTS and where I had my first and only TTT. They didn't use meds for my TTT during clinical testing, so I think this would be me as the "rat in the maze" while they watch with interest to see how long it takes for me "to get the cheese." I think there may definitely be some sleeping issues with me, but I'll probably talk to my cardiologist at UConn to get that done. Unfortunately, my insurance doesn't cover BIDMC, so everything is out of pocket (yowch!). The study is pretty much already set in it's parameters, but maaaybe I could sweet-talk them into monitoring me in my sleep by batting my lashes once or twice, hee hee. The consent forms and research description they sent me said there would be a doctor and nurse present at all testing and they would have all counter-measures available should an emergency arise. I am definitely concerned about the mental stress test, more about the embarrasment that may arise. The description is just like what you said, Cardiactec. Great, sweating it out, that sounds like SUCH fun (insert sarcasm here!). They also do the stroop word color test where the word is a color and the color of that word is a different color, like RED. My cognitive skills have definitely been hampered by not only POTS but Fibromyalgia, too - a double whammy. Cardiactec, thank you for sharing your experiences and for straight-shooting in your descriptions. I do need to be careful of having too many expectations - that can be such a downer when things don't work out. I'm so sorry you went through all that. I'll bet your participation in some of those studies is already starting or will soon start to benefit people with POTS, maybe even folks on this forum! I participated in some research at U of F for the Fibro, and that along with other research helped steer the focus from a muscular cause to a neurological cause. Now I have my miracle drug Cymbalta! So, don't feel like it was all for naught. Again, thank you for your replies! Deucykub

Hi, everyone! I could really use your opinion/input on something. My POTS doctor (autonomic neurologist) would like me to participate in some research he and his team are conducting. It would be within the next few weeks, and the information gleaned would answer A LOT of my questions about my body and POTS' effect. The research would last about a week, and pretty much all of it will involve the good ol' TTT (lots of ups and downs, ha ha). The last time I had a TTT in November 2006 it knocked me completely out of work for two weeks. I am just within the last month finally able to work about 3 hours a day from home, not exactly a record-breaker there. If I do the research, I'm going to have to stop all my meds. No meds plus TTT will probably throw me into a pretty big POTS hole (I just love that term... who came up with it?). Here's a list of what the research would entail: 1. Blood/Urine tests checking blood counts, electrolytes, kidney fx, and liver fx 2. General & Neurological Exam 3. Brain Blood Flow 4. Arm/Leg Skin Blood Flow 5. Calf Blood Flow 6. Sensory Testing 7. Sweat Testing 8. Several different types of drugs adminstered 9. Ultrasound of Carotid & Brachial Artery and Aorta 10. Nerve Activity Test 11. Lower Body Negative Pressure Test 12. Hand submersion in cold water 13. Nitroglycerin administration 14. Mental Stress Test (this one is the worst for me - arithmetic in my head - yeah right! I have a decent IQ, but I'll look developmentally stunted!) Lots and lots of information my doctors could use to treat me, and since my doctors are the ones performing the research, it's immediately available for application! No cost to me for any of it, and they actually pay a decent stipend and house you in the hospital for your stay. I'm not sure if I'm getting any better beyond my 3-hour-working-breakthrough. I'm sure that I'll feel pretty crummy after the testing is through. Answering some of my questions would stop the wondering and maybe focus my treatment to what will be most effective. Plus, I believe in helping the doctors research this illness so they can figure out how to make us and future POTS sufferers better! What would you do? I'm leaning towards yes, but I'd really like your thoughts before I decide (the doctor is calling me on Monday to discuss). Also, what questions would you ask? Thanks in advance for your help. I hope you are all having a "good" day. (Yikes! Sorry this is so long.) Deucykub

Hi, Madeline: The salted Crystal Light tastes the same as Gatorade to me. I started with half a teaspoon and couldn't taste it, so I thought, what'll happen if... and I put in a full teaspoon, a teeny bit more salty, but not really noticeable. I try to eat a lot with salt in it and on it, but the Crystal Light concoction takes 1,500 mg out of what I would need to eat each day (compared to Gatorade, otherwise 2,300 mg). Oh, I've also used the cheap-o store brand generic Crystal Light, tastes the same! Crystal Light is less expensive than Gatorade, and the generic is less expensive than Crystal Light. Every penny counts right now while I'm struggling with my ability to work! (Oh, I do drink it with a straw in a glass, however, or I look like a little kid that got into the Kool-Aid! Quite the moustache! ) Deucykub

Hi, Pat: The only med I know of off the top of my head is Florinef, which retains salt and helps increase blood volume, but I see you tried that. Hmm... I switched from Gatorade to Crystal Light with 1 tsp of salt added (shaken, not stirred, ha ha). This increased the salt in 64 oz from 880 mg (Gatorade) to 2,360 mg! It seems to have helped me a bit, particularly in increasing my salt intake because I could only eat so much food! Plus, there's only 40 calories in 64 oz of Crystal Light versus 400 in Gatorade! I hope you find a solution! Deucykub

WooHoo, Persephone! Nicely done! You should be so proud of finishing your Master's degree. I did mine through Distance Learning, and even that was hard. I too had many extensions and those dreaded talks with my professors. When I think of you sitting in an uncomfortable classroom in those awful seats... it must have taken every ounce of energy you had to do it! I am just amazingly proud of you, and it does show that for some of us, life will go on again, even if not right now. I think your message is one of hope, joy, and inspiration. If my heart rate wouldn't shoot through the ceiling, I'd give you a standing ovation for your perseverence, spirit, and willingness to keep going when the outcome felt grim. Yay for you! Yay! Yay! Yay! Yay! and YAAAAAAAAAAAAAAY woohoo yippee kiyae! Celebrate like crazy and pamper yourself like a princess. You deserve it!!!! Did I mention...? YAY!!!!!!!!!

Hi, Sushi: It sounds like you have (from a non-medical-professional opinion ) Orthostatic Intolerance (OI) in the form of Orthostatic Hypotension (OH) and/or Neurally Mediated Hypotension (NMH). OH is a rather speedy fall in blood pressure of 20 systolic or 10 diastolic (20/10). NMH tends to happen later after standing for a few minutes (about 12 for me, usually) that causes a dramatic fall in blood pressure and heart rate, resulting in pre-syncope (feeling of being very hot, nausea, tremor, blacking/greying out, visual disturbances, etc.) or syncope (flat out fainting). OH can be a diagnosis in and of itself or can be a symptom of a diagnosis. For example, Pure Autonomic Failure (PAF) is an illness that includes the symptom of OH. In PAF the autonomic system does nothing to compensate for the fall in blood pressure. My understanding is the autonomic system reaction to orthostasis (upright posture) in OH and PAF are similar. The naturally compensating factor for OH includes the muscular-skeletal response (contracting of the legs muscles), but for some reason, the autonomic system does not attempt to or succeed in its attempt to compensate. Medications are usually administered to try to assist the compensating mechanisms by increasing blood volume or blood pressure. This like has a good description: Orthostatic Hypotension. POTS is considered a partial dysautonomia - the heart is beating really fast to compensate for something, but it's debatable whether it is for bp or something else. Orthostatic Intolerance means that you develop symptoms on going from lying down/sitting to standing up. It's an umbrella term for many different types of illnesses. Dysautonomias fall under that umbrella, and then under Dysautonomias you get into specific dx such as POTS, OH, PAF, MSA (multiple system atrophy) and the like. I hope I got this right and that it clears up some of the confusion! I'm still in the learning curve, too, so I apologize for any errors! Deucykub