deucykub

Hi, Lina: Welcome to the forum! I am a fairly new diagnos-ee myself and have found this forum to be a wonderful source of information, support, and compassion. That must have been terrifying to have everything go black on you while you were driving! I've had black-outs since I was really young, and it challenges the simple act of walking, let alone driving. I'm so glad you came out of it okay and were able to find a diagnosis. I'm a little surprised that your doctor put you on a high salt diet with high blood pressure. When my doc put me on the high salt diet, she mentioned that my blood pressure being low made the high salt diet okay. Are they monitoring your blood pressure closely? I think they usually use the high salt to help increase blood volume, but it may be dangerous if your blood pressure is already high. I'm not sure though... I don't have burning in my feet... Sleep is tricky for me because I also have fibromyalgia, but it seems to have gotten worse since POTS struck. I am on 10 mg of Flexeril to help with sleep for the fibro, and that used to knock me out cold; however, since POTS, my sleep seems to be worse. Good sleep for me is a must. Without it, all my conditions seem to flare. I drive as little as possible. I get a very wierd, disconnected feeling after about 10 minutes of driving. It's like the information around me (where the cars are, where I am, sense of the speed I am going) just doesn't make it to by brain anymore. It might be disorientation? I'm not sure if anyone else has this. I feel completely out of control of my vehicle when it happens, so I pretty much stick to just driving to doctor's visits and the grocery store right now. Difficulty with concentration is a symptom of POTS to my understanding. I have a horrible time working, even from home, because I can't seem to follow processes or think logically. My field is highly dependent on details, and I get lost just trying to pour a bowl of cereal - I'll forget which step comes next and just stand in the kitchen and stare, or I'll do something silly like pour my cereal on a plate (thank goodness I caught that before I got to the milk! ). Exercise is a no-go for me right now. Even 5 minutes on an exercycle will knock me out for the next few days. If I push through and try to do that several days in a row, my body will head toward a HUGE crash. Fatigue is also my worst symptom. It's actually the only thing I noticed. It wasn't until I took a pulmonary function test that they realized my heart was whizzing along at around 150 bpm. The fatigue is totally disabling and mind-numbing. About once every two weeks I'll have a headache severe enough that I just go to bed and sleep. Other than those times, my headaches are mild and probably due to medication (midodrine). Everyone seems to have a different collection of symptoms when it comes to POTS, although there is a lot of overlap. I don't typically suffer from moodiness or weepiness unless PMS or frustration with the illness in general is involved. About once every 3 months I'll have a day of self-pity where I am so sick of dealing with chronic illness, and on that day, I'll cry, watch corny TV, and eat lots of ice cream. Those days are pretty rare though. Have you checked your medications for side-effects? If those symptoms become severe, you may want to tell your doctor. I hope that you start to feel much better soon! (Sorry this post is so long )

Hi, Lavender: I think so, yes. My legs have no significant swelling during blood pooling. They've even been measured by one of my doctors (how humiliating! ). However, I was diagnosed with POTS based on TTT results and symptoms in the upright position, including blood pooling, by a leading researcher in the field at Harvard University. My legs when standing or sitting (with feet on the floor) look a heck of a lot like the picture in this study The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management on the top of page 5 of 16 of the actual file/numbered page 88. This is the picture and associated text: "One of the more striking physical features in the postural tachycardia syndrome (POTS) is the gross change in dependent skin color that can occur with standing. The panel shows the legs of 2 people who have been standing for 5 minutes, a healthy control subject (left) and a patient with POTS (right). The patient with POTS (right) has significant dark red mottling of her legs extending up to the knees while standing, while the control subject does not have a similar discoloration."

I don't have a-fib, but my dad just had surgery for it this past fall. For a-fib, they don't ablate the sinus node but rather the atrial node and/or electrical pathways. My dad had a mini-maze done which was a bit more invasive than ablation. He chose it after researching the two options. They thought my dad's a-fib was mild and anticipated a two-hour surgery. He was in the OR for 10 hours - they found so many incorrect electrical pathways through the heart. I haven't personally seen any research on atrial ablation in dysautonomic patients, but sinus ablation has been found to make POTS worse. They're two very different procedures though on two different parts of the heart - if I understand and remember correctly!

The only thing I know of so far is to use a peak flow meter when a shortness of breath attack occurs. Sometimes, it seems like the asthma, but the peak flow is above the 80% mark, so it must be the autonomic dysfunction...? When it drops below 80%, then I think asthma... Have you found any other ways to distinguish the two? They feel identical, don't they?!? I think one exacerbates the other. If I'm having a mild asthma attack and then go to work, everything goes haywire, the asthma gets worse and the s.o.b. is so bad that I feel like I'm ER bound. I've been driven home more than once. I wasn't diagnosed with POTS until November of this year, but back in 2005 when the asthma was first diagnosed, I remember asking on my first visit to the pulmonologist..."Hey, any idea why my feet are turning purple?"

Hi, Melissa: I'm new(er) to the boards, and I don't think we've had a chance to "meet" yet. However, I have seen how supportive and caring you are through reading your posts. I'm so sorry to hear that you are fighting such a difficult battle. I'll be praying for strength, courage, joy, and health for you and wisdom for your doctors! Stay strong and keep up the fight. I hope you feel much, much better very, very soon. Deucykub

Ironically, I have been to an allergist and tested negative for allergies (except for a very, very slight allergy to cats - not enough to cause asthma). I'm fairly sure it is not a misdiagnosis since the PFT was positive. Plus, in my brilliance (or not, ha!), when I was diagnosed with POTS, I wanted to see if I could reduce the asthma meds. That didn't work out so well. I'm in pulmonologist shopping mode. One of my doctors is trying to find a specialist that would be interested in digging/researching to figure out what is causing my asthma (or whatever it is...). That's so interesting that your pulmonolgist treated your POTS, Goldicedance. Did he/she diagnose it as well? I'm really curious to see if anyone has discussed with their doctor or seen research that might link the two - perhaps as a specific trigger for POTS - or maybe as a result of autonomic degeneration. Or you might just have some thoughts on how or if the two could be related. I'd love to hear them! Thanks for your replies!

Hi, Persephone: I am so sorry! I have fibromyalgia as well, and there is nothing that can compare to that kind of pain. What dosage of Cymbalta are you taking? You mentioned you are off of all Codeine; do you have any left from before? When I have that kind of breakthrough pain, the only thing that knocks it out is a pain killer and sleep. I would call your doctor ASAP so he/she can get your meds adjusted and get you back to class! I really hope you feel better soon. Hang in there and get lots of rest, particularly restorative sleep. You're in my thoughts! Deucykub

My POTS symptoms developed about the same time that I was diagnosed with Asthma. I can't help but think they are related in some of our cases since bronchial constriction and dialation is an autonomic function. My pulmonary function test also showed a lowered (70%) oxygen diffusion rate, and my nails and lips turn blue quite frequently. I think my oxygen level desaturates as well (100% down to 96% sitting during testing then down to 92% during a walking test), but the pulmonologist interpreted this as a loss of signal (however, included the heartrate of 155 that occurred at the same time as valid). Unfortunately, it's hard to get a pulmonologist to listen because they are so used to critical ICU type cases. Just not being able to get to work or do basic daily activities isn't a big deal to them. Have any of you found or heard of a medical link between the two?

I start to feel really symptomatic when my diastolic drops below 63. If the systolic drops to the 80s while my diastolic is in the 60s or 50s, you might as well count me out for the day. When I stand up during those periods my blood pressure plummets, particularly the diastolic, which I have been able to measure as low as 43. At other times, the monitor just flashes an "E" at me. My guess is at that point it is too low for the monitor to register. The presyncope symptoms for me also seem to correlate with about 80/50. I think they should replace the "E" with a flashing "You are dead!"

Since my diagnosis of POTS is only a month and 1/2 old, my husband was really concerned about the heart-rates he was seeing on my self tests, so I went to see a cardiologist to assuage his fears. After a detailed discussion, the doctor told me if my heart-rates are greater than 120 all the time for two weeks or more, then I should be concerned and let him know. If they are bouncing all over the place though (such as 90 seated, 150 standing) that shouldn't cause heart damage in my case at least... As for feeling like a circus act... all the time! I am teleworking most days from home and am supposed to be in the office once a week, which rarely happens. EVERYONE knows I'm sick since I'm missing from the office. They've followed my health saga over the past two years. When I do get into the office, my day is spent explaining "how I am feeling," "what the doctors have said," "what appointments I have coming up," "what meds I am on," ad naseum. Part of me would like to use the loudspeaker in the office so that at least I'd only have to explain it ONCE. It's absolutely exhausting - not to mention talking makes me short of breath, which makes my day of activity even less fruitful because I fade pretty quickly without not being able to breathe. I really do feel for you, cardiatec. Having co-workers "know" really adds to the stress of the working day, and we're struggling to make it already!

Interesting... I was thinking Fibromyalgia, too. I've had this since I was 17 (1992), and it was at the time about as unknown as POTS is today. Just last year I found a new rheumatologist at UConn who talked me into trying Cymbalta (I had been on so many SSRIs with awful side effects that I was stubborn about taking any kind of reuptake inhibitor - Cymbalta is an SNRI). It turned out to be my miracle drug for fibro. I had been on and off every drug known to man for over a decade, and this one actually worked. There is some minor pain still - about a level 3 or 4 - but it's not even noticable compared to the level 7 and 8 pain I had previously. My pain from fibro feels bone deep (it comes back if I miss the Cymbalta for a day or two). My legs and arms just ache way deep down. My shoulders, neck, and between my shoulder blades scream with pain, as well as my hips, and lower back, with immobilizing, shooting pain that travels from the hips and down the legs. I had very bad "growing pains" and back spasms when I was younger, too; it just hadn't fully developed into the beast it would become. Dizz, Has anyone tested you for the pressure points that are used to diagnose fibromyalgia? I hope the pain goes away for you soon. It is so all consuming - energy, mind, body, quality of life. As a layman, I can associate "bone pain" with fibro because I've felt it, but that's not typically the descriptors a doctor would listen for as a diagnostic trigger. The slightest change in verbiage seems to pique a doctor's interest and send them searching in a specific direction. I'm just wondering if yours might be looking the wrong way! (Babs, has your doctor tried Cymbalta or Lyrica? Research is showing huge improvements in fibromyalgia pain, which shows that it may be correlated to the nervous system - neuropathic pain. Are these the neuro pain killers you were referring to?)

Hi, Elle: Beautifully stated. Thank you for sharing that with us. I hope that you feel better soon and that your frustration will start to wane. It is interesting that if a doctor doesn't understand something, it is the patient who is considered the idiot. Technology will catch up soon - I'd bet within the next 10 years but probably sooner! Medical researchers are learning so much about unseen illnesses, meaning those that chemically induced, like dysautonomia. I have great hope for a better future! Hang in there. Deucykub

Katherine: Too funny! Well, if we are twins, we're mirror images... I'm right handed. Pretty much the same progression for me except switch out having children with taking prednisone. Happy New Year!

Hi, Lavender: Masumeh is right on the mark. It sounds like your doctor is prescribing you medication without knowing what is specifically wrong. The doctor that figured out I had POTS is not my treating doctor for POTS. He actually said to me that all he could do is try to research and learn more about it, following in the footsteps of those who really understand it, and treat through trial and error. He sent me to see the Harvard Medical School autonomic neurologists at Beth Isreal Deaconess Medical Center in Boston, MA (about 2.5 hours away). All this to say, a good doctor knows when to send you to a more experienced or specialized doctor. If your doctor isn't doing that, sometimes being assertive can help (if you need a referral). (I used to be really cowed by doctors, never demanding the help I really needed. It was only with this last doctor - after a year and a half of feeling sick - that I said, "Of all the doctors I'm seeing right now, which is quite a few, you seem to listen the most and be the most compassionate. I really need help. Everyone is focusing on their specialty. No one is tying all my symptoms together, and I am really confused!" To my surprise and delight, he really listened, gave me a VERY thorough exam, head to toe, followed up with lots of testing, took the lead, and finally figured out POTS.) Doctors sometimes need to understand that when you aren't feeling well, you don't want trial and error, you want to feel BETTER, FAST! If you don't need a referral, you might consider going to a specialist without your doctor sending you (although, you can call and let the doc know your plans as a courtesy). Where are you located? Perhaps one of the forum members can recommend a knowledgable doctor for you! I hope you feel better very soon!

I'm in CT, so I don't think it's due to the altitude; although, I have heard that can cause it. For those with Raynaud's, was there a test performed to confirm it? I did a self-administered cold water submerssion test, and my hands and nails didn't change color at all. When they did the pulmonary function test, my O2 started at 100% and dropped to about 96% while taking the seated part of the test. When they walked me up and down the hall, I saw it drop to 92% on the pulse-ox, but the tech didn't include that in the report. My pulminologist just learned of POTS during my last visit. He previously thought my shortness of breath was psychological. The PFT was done by a different doctor and hospital, and this pulminologist dismisses test results outside of his own lab (including a spirometry that showed I was breathing at 25-30% when I was first diagnosed with asthma). My cardiologist (EP) and neurologist both say the blueness could be caused by POTS, but I have only found about three people (including this survey) that are dx POTS and experience it, which makes me think something else might be happening.

Hi, Lavender: If I recall from your previous post, you haven't been officially diagnosed with POTS, yet. If that's the case, you might consider mentioning that to your doctor. It could very well help with your diagnosis. As a layman, it sounds POTS related to me, perhaps because of low blood volume or blood pooling as futurehope mentioned. However, I'd talk to a professional because there are other illnesses that can constrict vasculature that could be the cause - or who knows what else... Deucy

^^^That just cracked me up. Thanks for the good laugh and for the explanation.

Hi everyone. I asked this question in a different thread but didn't want to hijack that thread, so I edited it out. POTS/Fibro moment, I guess... Do any of you experience cyanosis/blueness of the nail beds or lips? I've had this since July of this year, and my doctors have attributed it to POTS. (I also had a test with a lower - 70%, 78% adjusted - diffusion (DLCO) rate. Has anyone else had a test result like that attributable to POTS?) If so, what have your doctors said about it? This is separate from blood pooling, which I have, too. I guess we are all just "colorful" people! (Lavender, to answer your previous question, I have not gotten an answer yet to why my DLCO was low. My pulmonologist said it was just "wierd," which was so reassuring, ha! I'm changing to a new pulmonologist since this one has not been particularly helpful. No one has told me that it could be attributed to POTS so far. )

Hi, Maxine: My heart just goes out to you. While I am new to POTS, I am not new to chronic illness, having dealt with it for the past (wow) 15 years. One thing that I've learned is the psyche sometimes just needs a chance to grieve. Chronic illness has taken something from all of us, and while we fight it and don't give in to it, that does not make it okay. It is absolutely unfair that any one has to deal with illness in life and particularly unfair when that illness is chronic. But, of course, it is part of life and something we learn to deal with and live with and find joy through. Keeping a positive attitude and a strong spirit is so essential to coping with chronic illness, but there are days that the human spirit can only take so much - days when months of cancelled plans and missing that last birthday party just truly overwhelms. On the very worst of those days, I allow myself one "oh crum" day, which usually happens about once every three months. On that day, I get to cry (sob even), cry with my Mom (my confidant), eat lots of chocolate and ice cream (splurge), watch sappy movies and dramas on TV, and ignore everything else. I get it all out. God and I even have some one-on-ones where I voice my displeasure at the situation. What I find is the next morning my spirit is renewed. I start to notice the beauty in life again. I thank God that I have a wonderful family and husband who stands by my side. I take note that it could be so very much worse, and while it is still unfair, I CAN and WILL beat this thing, and it will NOT destroy my spirit. Whether it is some kind of chemical cathartic release, or a true spiritual healing, I do not know. But I find myself really feeling better and able to attack the world again, a stronger and more whole person. Just make it through today - tomorrow will bring more peace. You will find your joy again. You'll be in my thoughts and prayers for quick answers, supportive doctors and family, and for a renewed spirit. Deucy

Hi, Maxine: Boy, I wish I knew; that would help me understand the etiology of this illness in my life. I started blacking out (pre-syncope) at age 10. Diagnosed as being tall and thin. At 17, I suffered severe back pain, upper and lower as well as severe fatigue. FINALLY diagnosed as fibromyalgia at age 21. At 30, my severe fatigue returned, dismissed as fibromyalgia until my rheumatologist noticed I was short of breath, too. Diagnosed as asthma at age 31. Around the same time, my legs started turning purple, and then, shortness of breath would not go away despite normal peak flow. Diagnosed as POTS at age 32, November 2006. I'm pretty much clueless!

Just tried a new trick and thought you all might be interested. I can barely drink plain water let alone salted, but as Dizzy Dame mentioned, Gatorade is loaded with calories. Turns out you can mix 1/2 teaspoon of salt with the Crystal Light mix plus 64 oz water, and it tastes great. There are 400 calories and 880 mg sodium in a 64 oz bottle of Gatorade vs. 40 calories and 1180 mg sodium in the same quantity of Crystal Light (less expensive to buy, too). So far, I've tried Raspberry Ice and Strawberry-Kiwi. My apologies if this has been mentioned before. Happy salting! Deucy

Hi, Pam: Thank you for sharing your experiences and congratulations on returning to work. It is really helping me to know that it's not just me who can't work through this illness. Although, I wouldn't wish POTS on anyone (well.... maaaaybe my boss just for a few days to encourage understanding? ). You are so right about the pressure of being the breadwinner. I wouldn't change it for the world, though. My husband supported me through my graduate education, and now it's his turn to shine! I haven't tried FMLA yet since I really do need the paycheck right now. Unfortunately, the government doesn't offer short-term disability pay either. We have EEO Counselors, but they tow the bureaucratic line and protect management - at least, so far. I hadn't thought of trying EAP. That's a good suggestion! I've already asked our Union for help (never thought I would do that). It's very odd to have a graduate education and be represented by a Union. I'm used to fighting my own battles, but the attitude in my agency is akin to a factory with management vs. represented. Thank you so much and I hope you continue to feel well! Hi, Julie: Wow, how exciting that you are starting your own business! I'm so glad you joined the discussion. Your experiences are going to benefit so many readers on this forum. Isn't it always the case that the symptoms pop up when the doctors aren't watching? It's like bringing your car to a mechanic to check out that "clicking sound." They never hear it! I once told a doctor that apparently the solution to my illness was to be within a 100 foot radius of him because everytime I had an appointment I was feeling better. Argh. It's so amazing when you finally get through to that one doctor who figures it all out though. I'm glad to hear you were able to make it past the wall of lab coats to someone who was able to diagnose you! What an great career change for you. I certainly couldn't be trusted around chocolate all day. Resigning must have been terrifying; I admire your courage! I truly hope you find success in your new venture. (If you start selling chocolate online, please let this chocoholic know!) Your experience with travel and work are very relevant for me. I've been looking for a new position away from these awful managers. One job I've applied for is supporting an elite military command, and that would probably require travel. It looks like that's something I may need to think about. Do take it easy on yourself. My Mom at 60 can out last me at 32 any day . I always say I'm 32 going on 70 but with a smile fixed on my face. I haven't spoken with anyone in HR, yet, although I have worked with our EEO Manager. She has not been of much help so far, backing up the managers in our office. She did let me know I could file an EEO Complaint but not in a helpful kind of way, ha ha. Our Union (an organization I am completely NOT used to because I'm a professional level employee) has taken an interest in my case and is ready to go to bat for me. I really hope this doesn't go to court, though. I'm not sure I have the stamina for that. Thank you for taking the time to post your reply. I look forward to seeing you more on the forum! Best of luck! Deucy

Hi, Lois: Thank you for taking the time for such a detailed reply. My doctors in Boston did check for Lyme disease and the test came back negative. I really have no idea what is causing POTS. It could be a long term thing for me since I've been blacking out since I was very young, or it could be related to my health struggle the year before with asthma and bronchial infections. I'm not sure if it started quickly or crept up over time because the symptoms overlap so much with asthma and fibromyalgia. I am indeed a Federal civil servant. Thank you for sharing your experiences with POTS in relation to working in a Federal job. Your story sounds so familiar. Even when I am feeling better, I'm still missing more work than I would like. It's so frustrating! Thank you for offering to share your accommodation information. If this next round is denied, I may take you up on your offer. I think my doctor is taking the approach of easing me on to medications because I am on so many now to begin with that I've lost count. They started first with just fluids and salt, then added midodrine, and told me the dose of that may need to go up. I think I will contact them tomorrow and discuss upping the dosage since I am still struggling. It's good to know that there are other medicines that may help if my current ones aren't working. I am already on an SNRI - it may be that was already helping me when POTS developed. My rheumatologist put me on Cymbalta for neuropathic pain due to fibromyalgia. Thank you so much for your message of hope and for Dr. Grubb's article. I think I will use that article in the reasonable accommodation process. Congratulations on your retirement! You deserve healthy days after working so hard. Enjoy every moment! Deucy

I have been tall and thin almost all of my life. When I was a teenager, docs used to make me write down what I ate to prove I wasn't anorexic! Last year and this year I gained a total of 20 lbs because of two rounds of prednisone. Before that I was 125 lbs, 5'10 1/2". Getting rid of the excess weight has been really difficult with exercise intolerance. Interestingly, sometimes tall and thin people are overlooked by the doctors, too. I have been "blacking out" when I stood up since I was very young, around 10 years old. I'd stand up and the world would fade to black, I'd get dizzy, a sudden headache would strike, and my ears would ring. My Mom took me to see a doctor at the time who said it was because I was... and I quote "tall and thin." I honestly thought up until about 2 months ago that this was normal for me - in fact, my doctor had to pry that symptom out of me because I never mentioned it - hmm... guess I didn't have "tall-thin" disease!

Hi, Julie: Absolutely, yes! My doctor's notes stated that the pulse in my feet was barely palpable, and I had a Pulmonary Function Test with the statement "patient tends to lose signal" of the pulse-ox. My feet and legs turn the most lovely shade of purple whenever I'm upright, and my hands turn purple at times. When my hands turn purple, I am typically feeling really sick. This was the link that really hit home when I was researching the color changes in my hands and legs, which according to my doctors is due to blood pooling in the extremeties: http://www.ipej.org/0602/raj.htm (figure 2 will probably look very familiar). Have you talked to your doctor about getting a TTT? Have you been diagnosed with POTS? I hope you are feeling much better soon! (Edited out last question... don't want to hijack this thread. )