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Hi, Chrissy: I wanted to echo what doctorguest said. If you can at all finish your high school education, absolutely do it! In fact, don't stop there. You can conquer the world - but maybe just a little more slowly. I had to finish my high school education from home through a program called "home bound" because I was too sick to go to school. Then, I finished my bachelor's degree. It took me 7 years and LOTS of medical withdrawals, but eventually, it was done! Later on, I went on to complete a master's degree online, again, slowly but surely... baby steps. POTS doesn't have to win. It does change our lives - in a big way. There's no denying that. But it doesn't have to RULE our lives. Ya know? Now, to answer your initial question... I agree with the others on here. POTS doesn't decrease our IQ, but it does cause problems with our thinking processes because of the lack of blood reaching our brains. This happened to me just the other day. I was in an interview on Thursday and completely blanked on anwering a question, that I KNEW from years of experience in the field. I even tried stopping and saying "let me try that again," but nope, I could not explain how I would do the work. The answer was... poof... gone. You are not alone on this one. Just remember to take it easy on yourself and not to get too frustrated. Sl-o-o-o-o-w and steady seem to be the trick in this race.

I've had fibromyalgia since I was 17, which would be 16 years now. Darvocet was the only thing that helped me for YEARS. I only used it for pain that ranked from 7 - 8 on a scale of 10 (...never rated myself higher than that, as I believe my pain has never been as bad as it could possibly be). I always found it dulled the pain to the point that it was manageable. Although, it could very well be that I just didn't CARE about the pain anymore. I still use it today for severe breakthrough pain, but, thank God, my UConn doctor, and Eli Lilly & Co., Cymbalta has been a miracle for my pain. My script of Darvocet is for 20 pills, and that lasts me four months or more, now. This study is actually a little disconcerting. Results like these could be used to justify withholding pain medication from those in pain.

Thanks everyone for your replies. I guess I'll run this by my PCP. I mentioned it to my Autonomic-Neurologist, and he said the same thing as you, DoctorGuest, "not POTS." He didn't seem too concerned by it, though. I've finally whittled the number of doctors I see down to three from about eight at the start of my illness, so if at all possible, I want to avoid that number going back up again! Wishing you all the best,

My husband noticed last night for the second time that my eyes were moving quickly from side to side on their own. As he put it, "You look like the guy in Identity," and I knew exactly who he meant. If you're interested, this clip on YouTube shows the actor my husband was referring to, but if you haven't seen the movie this part is a very big SPOILER moment! http://www.youtube.com/watch?v=9SVT4Y2BMnI at 3:40. I've never heard of this symptom with POTS, and I will definitely be asking my autonomic neurologist about this. Does anyone else experience this or have any insight? Oh, too funny, this emoticon is perfect! ->

This is the best article I have found on POTS for the lay-person: http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm It is on a pediatric website but is written for all persons with POTS and NMH. It also includes great details on what triggers symptoms and includes the fact that SITTING upright is a trigger (a big one for me, personally).

Hi sister smurf! My legs also turn a purplish/blue all the way up to my thighs, and it happens really quickly as well. On top of that, my hands and arms change to the same color (the backs of my fingers particularly are a very solid blue!). If I lift my arms over my head they go back to normal, hence, blood pooling. My lips also turn blue when I am upright. I just consider it an outward manifestation of my color personality! A co-worker saw my arm and hand change color during a meeting, and he pulled me aside and said, "I saw your arm turn grey!" I shrugged and said, "Oh, that's just blood pooling... it means blood isn't getting where it needs to go. That's normal." He just kind of stared and said, "Oh, umm, okay." It's amazing what we start to consider "normal" and shrug off after a while. Anyone else would have been driving to the ER or calling a doctor in panic. This is what cracks me up when people think chronic illness is psychological. If anything, we ignore our symptoms much more than healthy people! Wishing you all the best,

Hi, Angela: I have been in a Reasonable Accommodation battle with my employer (the federal government) for just about one year now. By this time, I've done a lot of reading and have even consulted with an attorney a few times, so I'll try and share with you what I know about this. ****I AM NOT A LAWYER AND THIS IS NOT LEGAL ADVICE.**** The Americans with Disabilities Act (ADA) covers those employees who work in the private sector (the Rehabilitation Act is for federal employees). Employers are required to grant a Reasonable Accommodation under the following circumstances: 1. An employee has, has a history of, or is regarded as having a permanent disability that substantially affects one or more major life activities. Examples of major life activities are breathing, walking, lifting, standing, even bathing and performing household chores! 2. That employee is a qualified employee, which means that he or she can perform the essential functions of his or her job with or without accommodation. 3. An adequate reasonable accommodation does not cause the employer "undue hardship." If an employee meets the above, then technically, he or she is covered by the ADA. If an employee who is covered by the ADA is denied a reasonable accommodation (not necessarily the one(s) the employee specifically requested but any accommodation that would result in the employee having access to the workplace), that is discrimination, UNLESS the only reasonable accommodations possible would cause undue hardship (this is strictly defined by the EEOC). They are so many nuances to this law that I cannot begin to describe. Because of certain phrases I did or did not use in my requests and emails, I am now less likely to be eligible to recoup damages from the discrimination that has absolutely occurred over the past year. If I can give you any advice, it is this: Before pursuing a reasonable accommodation request, talk to an attorney. Before pursuing a reasonable accommodation request, talk to an attorney. Before pursuing a reasonable accommodation request, talk to an attorney. ad infinitum!!!!!!!!!!!!!!!!!!!!! I work in government contracting and am pretty smart when it comes to keeping my liabilities covered, but the caselaw for ADA is so incredibly extensive and the requirements are so detailed, I still blew it in pursuing my request. My attorney first complimented me on my handling of the case, but when we got into some of the documentation, I had used just the wrong phrases in some places that may have negated my ability to recoup lost pay, which for me is now greater than $25,000. Did I mention I am in a really messy case? Also, if you are a federal employee rather than a private sector employee, the game changes and becomes even more convoluted and restricted. Federal Employees are covered by the Rehabilitation Act. What you can do first is feel out your employer to see how willing they are to help you out. Express your desire to be in the office and working and ask them if there is any way they can help you do that... suggesting things like teleworking, a recliner for you to sit in rather than a regular chair, any ideas you have that might make your working situation "workable." If and when you do this, please, oh please, oh please do NOT use any of the specific terms on the EEO site (www.eeoc.gov) or terms I used above, which are relative to Reasonable Accommodations such as "EEO," "EEOC," "Major Life Activities," "Reasonable Accommodation,"Qualified Employee with a Disability," and "Undue Hardship." I have learned the very hard way that using these terms can disclose (correctly or incorrectly, the latter for me) some specific knowledge about the process that may waive your rights to recover losses if the situation gets sticky and turns into a lawsuit. Okay, now that I have said that - here are two links on the EEOC page that are really helpful: http://www.eeoc.gov/facts/ada18.html http://www.eeoc.gov/facts/ada17.html Here's a big, important point... there are no magic words that you have to say to request a reasonable accommodation under the ADA. All you have to do as an employee is express that you have a sickness/illness/disability/medical condition/health issue (no specific terminology required) and need help to work. That's it. That is an official Reasonable Accommodation request. So by casually "feeling out" your employer you are starting the process. If your employer is hesitant or unwilling to help you out, contact a lawyer immediately. They can tell you step by step by step what you need to do, and they can make sure you are following the process correctly to make sure you are covered in the event of a lawsuit. Thinking back about 11 months now, I wish to high heaven I had bitten the bullet and consulted with an attorney. A consultation usually runs about $300 - $400 (although some lawyers may offer free consultations). I'm looking at a loss of $25,000 in salary (I worked some hours but could not work full time) and wondering, while knocking my head against the wall, why I didn't get in touch with an attorney. MAJOR Lesson Learned for me... I really hope this information helps you. Don't hesitate to ask for help from your employer; it is absolutely your right enforced by law. However, if it starts to look like they might not help you out, get assistance from an attorney who really knows the process. I'm so sorry to hear you are going through this. I know your pain and fears when it comes to wondering where the next paycheck will come from. Hang in there, though. You will get through this. 11 months back, I didn't know how we'd make it to the next month, but somehow, we still have a roof over our head and food in our mouths. The thought itself of insecurity is scarier at the start than it actually is in the experience over time. You will be in my thoughts, and if I can help at all, please feel free to get in touch with me. Take care! (Sorry this turned out so long. I'm a little passionate about keeping you guys out of the mess I'm in. )

Hi, Pat: The first description you gave made no sense to me, since I can't actually relate to having a rubberband stretched length-wise across my body. However, the second thing you said, a description of how you felt after a more common event - that made everything click! When my fatigue is extreme, I explain it by comparing it to staying up all night when I was a teenager and then trying to function at around 5:00 PM the next day without having had any sleep. It's the "running into walls, can't think, feel sick, can't stand, vision blurring, mind numbing, headache, nausea" kind of tired. Not the "golly, I sure did work eight hours today, and I'm tired, hey honey wanna go dancing now?" kind of tired. I always have better luck describing a symptom using likely common experiences that the doctor can actually relate to, rather than a description of a situation they have probably never experienced. (and if my doctor's been running around with rubberbands stretch along his body... I may need to be concerned!) hee hee I hope this helps! Good luck explaining your symptoms. I hope you are able to get them across well enough to get the help you need. Take care!

Hi, Angela, Jennifer, April, Katherine, Rachel, Tessa, and Martha: Well, unfortunately it went about as I expected it, which means a 3 1/2 hour bashing fest with me as the target. What got me through, though, was knowing you all were here, supporting me through this. I had a lot more strength than I expected, and presented my defense fairly well. Words failed me several times, but not nearly as bad as it could have been! My supervisor took the side of the other party even after they had left, shooting questions at me right and left. That consisted of, well why didn't you do this? I did. and this? I did. and this? I did... ad nauseum. She was digging to find anything she could pin on me as a failure. The good news is she didn't find it and was forced to question petty, non-priority stuff to try and make me look like I was not doing my job. At least, I know I'm still on top of my game in that respect! But hey, she uses her imagination when she writes letters to me and makes up performance problems anyway... It makes me wonder why she expends the energy to look for real ones if her ficticiouis reasons work just as well. I was really sick by the time we were done. My husband drove me there and picked me up... bless him. By the time he got there, I could barely stand up to walk to the car. That front seat was fully reclined before my tush hit the chair I think! Thank you all for all of your advice. My heart is just racing and pounding, and I am so nauseated, weak, and dizzy. I did call my doctor today and ask for some anti-anxiety meds, and she is calling those in for me to help calm my ANS which is spinning out of control right now. Thank you for suggesting that - I never would have thought to ask! The most frustrating thing about today is it reminded me just how disabled I am. I keep thinking I'll get back and that I am sooo close to being back. But today was a harsh reality check about how controlled I'm keeping my environment just to function and what happens when I'm outside of that environment. It felt good to know my POTS sisters were linked arm-in-arm with me today. It helped so much to know I was not alone. Thank you so much for your words of wisdom and support.

Hi, everyone. I'm not sure why I'm posting this, but I guess I just need to get it on "paper." I've been asked to come into the office tomorrow for a meeting with some contentious folks outside of our agency that I've been working with and who like to play manipulative games to get their way in our discussions. I had to give a pretty serious ultimatum, and my lead decided that now we can have a "talk about our feelings" meeting with these people even though the ultimatum was specifically designed (and agreed on) to stop precisely these kinds of tactics. Before that, I meet with my lead to catch him up on this history of the situation. Add to this, I have been in a struggle with my supervisor for reasonable accommodations that is about two weeks away from being a lawsuit (10 months, 12 doctors notes, 2 equal employment notes, 2 independent evaluations and recommondations supporting, and still no accommodation). I'm working from home because I don't have the energy to get to work. I haven't walked into the office since mid-November. Bathing alone drops my pressure to the 80s/50s (from 110s/70s due to the miracle of Florinef) and knocks my heart rate to around 160. Then, I have to get dressed, which does the same thing, put on makeup - same thing, style hair - same thing... which would normally leave me napping for the rest of the day. But then I have to DRIVE to the office, which is terrifying as I get horribly disoriented even when I "ponytail" and "no shower" it to get an errand done. Then I get to walk into this adversarial situation and hold my own for several hours. I can triple read every word I write from home to correct all my cognition difficulties that show up in an email, but I can't "fake" it in person. My brain gets confused so easily.... I start to talk and everything comes out backwards and upside down. I make no sense. It's going to be humiliating. Work has already threatened to fire me... the last thing I need to do is give them more reasons why this would be a good idea. The people we're meeting with will be trying to convince my lead that I am biased against them (when I've actually bent over backwards to help them myself and to get other people to approve help for them), and my supervisor will probably want to meet with me to discuss my future. I'll be on the defensive the whole time I'm there, and those emotions are, of course, really great for POTS. Not to mention, it will also LOOK like I'm on the defensive, which is not a position of strength. I can barely work 5-6 hours from home, and that is keeping every part of my life under perfect "POTS" control to maximize my ability to work, so strength is something I have in short supply anyway. I know it will go better than I think, but right now I'm really scared.

((((((((((((BIG HUGS)))))))))))))) I haven't fainted in nearly seven years, but it was a miserable experience when it happened. I'm so sorry this happened to you. How frustrating. Is there someone at work you trust (to not use your medical condition against you) that you can prepare in case of an emergency? Hopefully, this won't happen to you again, but it's smart to be prepared. The last thing you want people to do is sit you up! To try and find a positive in all of this... how great that it happened around experienced medical personnel who took good care of you! Take it easy on yourself today. Syncope and even presyncope can take a lot out of you. I hope you are feeling better soon.

So far all of my doctors refuse to put me on beta blockers. My very first asthma attack was while I was on Propranolol, a non-selective beta blocker, and I was taken off that med right away. After that, my asthma attacks were never as bad (was breathing at 25% at that first attack, never got worse than 50% after). I think the doctors blame the severity of that first attack on the beta blocker. There are selective beta blockers, however, that interfere less with breathing and focus on the "betas" associated with the heart. Those are supposed to be much more safe - but it depends on the study. Some doctors advocate selective beta blockers for asthma patients with heart conditions while others say it is dangerous and should be avoided. It does make me think we asthmatics with POTS are missing out on a crucial med for POTS. I'm going to a new Pulmonologist soon and plan to discuss it with him. Getting the tachycardia under control would be so wonderful. There are times my heart is chugging along at greater than 180 beats per minute, and on average, standing, it's usually at least 140. Not horrible, but it makes me really tired!

Hi, Tessa: I don't have much to add, but I wanted to say "Hi." I've seen people have allergic reactions, and they can be quite serious. My poor cousin used to have horrible allergies to cats that sent him to the emergency room many times. This is probably something that should be addressed as a priority. Also, I wouldn't hesitate to talk to your doctor about it even though it happened a while ago. A good doctor will be glad you brought it up! Having so many symptoms plus memory difficulties = me always forgetting to tell the doctor about something. You're not alone in that club. I hope you are doing well!

It must be so wonderful to be back and surrounded by your own environment. Welcome home, Melissa! We look forward to your update when you are up to it and continue to send our thoughts, prayers, and warmest wishes.

Hi, Rita. You're right; there are two different coloration changes. My legs, feet, and hands will go the purple-blue from pooling, but there is the other bluer coloration that occurs in my toenails, fingertips and nails, and lips. I'll have to keep a mirror around to see if the blueness subsides in the supine position. That's a really good question! My doctor did say she saw my lips turn blue on tilt. Every time I look in the mirror they are blue, and that's typically when I'm standing in the restroom or driving in the car. The worse I feel, the more blue my lips are. On a better day, they are slightly blue (only noticable under good lighting). When they are a darker, more obvious blue, I am feeling miserable. The asthma is hanging around at 80 - 85% capacity right now, so it's in the "green" and has been on days when my lips are the darker blue. Any idea how POTS could cause it? Can asthma cause it when peak flows are in a decent range? Hi, Flop. I kind of thought that was what you were thinking. I've searched for pictures of central cyanosis of the tongue online but have not found any that are good for comparision purposes. Hopefully, the other day was a fluke. When my lips have been blue, so far, no doctor has asked to see my tongue. It might be they already checked that in the exam. That plus the ABG pretty much rules out central cyanosis, and the ABG was on a really BAD, symptomatic day. My fingers were so blue the tech was afraid to do the test (lips were blue, too). Then I almost fainted on her during the draw. Poor thing...she was glad to see me walk out of there! Any other thoughts or theories?

Hi, Pat. I did look at everything on that site during my seemingly endless research. Thank you, though! Hi, Flop. Thanks so much for your theorizing! I think you're on the right track. My hands seem to have blood pooling, too, so it's possible there is a constriction problem there in addition to the lower extremeties. That's actually one sign that helped my doctor diagnose POTS. He was examining my hand, and I said, but watch, if I lift my hand and arm up, the purple-ness goes away. And he said, but that's counter-intuitive; it's more likely to be blue when the hand is up! Is it possible that if there are additional venous constriction issues that the body triggers the next level of peripheral constriction to maximize central blood flow? Is there a hierarchy of constriction? For example, legs, then hands, then lips as the body compensates? My tongue is typically pink; although maybe two days ago, it was bluish on the top with pink only around the edges. They did an arterial blood gas back in October, and that didn't show central cyanosis...

Thanks for the link, Pat. That's part of why I am so puzzled by this. It seems that everything has been ruled out! Persephone, did any of your doctors tell you why or how low blood pressure would cause blue lips? I've heard this theory in passing, too, but I can't find anything online that directly relates the two. The closest I can find is low blood pressure due to hypovolemia might cause it? The odd thing is since having POTS my blood pressure has been higher (around 100/70), but I wasn't blue before when blood pressure was lower, between 60/40 - 80/60.

Aw, man... I hear you. The same stuff got me, too. Since colds have a tendency to degrade into asthmatic bronchitis in my world, I just went to the doctor after a couple of days and am now taking Zithromax and Nasonex. Over the counter Claritin D (available in drugstore generic, too), has always worked well for decongestion and Robitussin for cough. I have no idea about interactions with other medications though, and would definitely check with the pharmacist as lthomas advised. I'm not sure if they make POTS worse, since I'm feeling pretty crummy anyway. ha ha Also, if the cough is dry and unproductive, a speech therapy trick to stop a cough jag is to cough once, then immediately inhale to full capacity through tight, pursed lips (breathing through a pin hole), and then immediately exhaling all the way through the same. That really helped me reduce asthma attacks, because once you start coughing you trigger more coughing, and that would make my asthma worse. Hope you feel better soon!

Hi everyone. I've posted about this a couple of times now, but this is driving me nuts. I'm not worried, but I'd really like to figure out the cause. Several parts of me turn blue - my feet and legs (blood pooling from POTS), my fingers and nails (seems to be two phenomena - one blood pooling, the other unknown), my lips and breasts (completely unknown). These are the things I have either tested negative for or have been clinically excluded: Raynaud's Phenomenon, Anemia, all testable autoimmune diseases, cardiac septal defects, restrictive and obstructive lung diseases (with the exception of asthma), and pulmonary hypertension. Here are the abnormalities: POTS, Mild Aortic Insufficiency, Asthma, some lung scarring, Compensated Respiratory Alkalosis, Low-ish Diffusion Rate/DLCO (70%/78%adjusted when symptomatic; 87% when not symptomatic), positive ANA (1:160 titer), and "tend to lose the signal" during pulse-ox (100% down to 96% during seated testing down to 92% during 300 ft walk). My lips get more blue on exertion and when I laugh. Some doctors say it could be POTS, but they won't explain the mechanism. I can't get a straight answer on hypovolemia. Other doctors shrug their shoulders with a concerned look except for my Pulmonologist who thought my shortness of breath was psychological. Then there's my uncle, a practitioner (Nursing PhD), who simply says, "POTS doesn't make your lips turn blue." Do you have any thoughts? Do you have this symptom, and if so, did your doctors figure it out? Thanks for any input you might have! All my best!

Well, I guess I'll hang to that theory a little longer then. Thanks, Doctorguest!

There is, and I'm always having to remind myself of that. BP and HR are the empirical medical signs that go along with all of the symptoms. Doctors seem to focus on those because 1. they are vitals and 2. they are readily measurable. My understanding is POTS is a disorder of the autonomic nervous system, which controls pretty much everything you don't think about until something goes wrong. There are medicines available that raise/lower blood pressure and lower/control heart rates, so those are prescribed - known problem/known solution - but those medicines don't seem to directly address the overall ANS dysfunction. Things are still going wrong in the ANS. We just have splints to help with the signs and symptoms (like a splint for a muscle injury, it doesn't cure the injury, just restrains it). That's my theory today at least.

Hi, Linda: Hang in there... a second breath will come and get you through this. One other option for you - although a little farther away. There is a group of Neurologist POTS specialists that I see in Boston, Beth Israel Deaconess Medical Center/Harvard Medical School. They know POTS, and they know Neurology: http://bidmc.harvard.edu/display.asp?leaf_id=4351. The appointment was pricey (~$2,500 due to the tilt testing) for me because my insurance is limited to the Connecticut area, but I didn't have to pay in advance. I'm just making little payments on it now until I can get back to work. They are also doing a POTS study and are looking for participants. Study = Free! Keep smiling and laughing. Someone somewhere will figure this out for you!

^^^^^^^ That's really good advice!!! ^^^^^^^ If I forget to take my meds, I won't typically feel the effects until the next day, unless it's the Cymbalta. If I miss that, I have horrible night sweats (which is fresh in my mind, because I forgot the meds yesterday and was drenched last night!). Does your daughter get the sudden movements/seizures as she is falling asleep and at night? I used to take my Cymbalta at night and had those problems, but changing to taking my dose in the morning seems to have helped a lot with that - evidenced by fewer bruises on my poor husband!

Congratulations!!!!!!!!!!!!! I wish you all the happiness in the world!

Hi, Kaye. I've been away for a while, but I just wanted to reiterate what the others said about limits. For me, it took becoming sensitive to what my body was trying to tell me. I was highly DEsensitized prior to POTS because of another chronic illness. For that, the only way for me to survive was to ignore the pain. When I first started getting sick with POTS, all I felt was fatigue; although, now I know I had a TON of symptoms but (unconsciously) didn't acknowledge them. (I'll actually do a little inventory of myself once in a while from head to toe when the fatigue strikes...am I feeling anything here? here? here? Weird, huh?) Now I watch really closely. If I start to feel even a LITTLE tired or a LITTLE nauseated, I stop and rest. That's hard for me, too, because I am "pusher-througher" - nothin's gonna stop me (oh, except POTS apparently... ) I do this every day with work now (telework from home). I've learned if I go past that point, the next day I won't be able to work. It took me about 5 1/2 months to become somewhat adept at listening to what my body is screaming, although all I hear is a whisper until it's too late. I hope you get over this rough patch soon. All my best!