deucykub

Hi, Jacquie: Good luck with your norepinephrine testing. I'd be interested to hear what you learn from it. The affect of norepinephrine in POTS has had my attention because I was (and still am) on an SNRI (serotonin norepinephrine reuptake inhibitor) prior to my diagnosis of POTS. My rheumatologist prescribed Cymbalta (the SNRI) for neuropathic pain due to fibromyalgia. My understanding is a reuptake inhibitor would result in increased amounts of that neurotransmitter in the blood stream because it prevents the inital releasing neuron from absorbing the 80% that lthomas mentioned. I see on the forums that others have had this same drug prescribed for POTS. What I don't completely understand is if those diagnosed have higher blood stream levels of norepinephrine levels to start, why does increasing it help? Is the theory that the presence of more is a sign of the body trying to compensate (rather than a malfunction) and the SNRI boosts that compensatory measure to a functional level?

Hi, Tanzanite: I agree with Tami. If it doesn't go away, you might want to have a doctor check that out. It's so easy to attribute every symptom to a chronic illness, but sometimes that may not be the cause. I blamed my fatigue on fibromyalgia in 2004 until a doctor noticed I was short of breath (this didn't even occur to me). I ended up with a diagnosis of asthma, breathing at 25-30% of capacity. Then, I blamed the shortness of breath in 2006 on asthma even though my peak flows were okay. That turned out to be POTS. Yikes! Take care! Deucy

Hi, everyone. I'm having a rougher day today, but I wanted you all to know how much I appreciate your responses and advice. Even moreso, I am so grateful for the support given on this forum. Wow, I am really almost in tears. When I am feeling a little better, I will respond directly to your posts. Thank you so much!!!

Hi, cardiatec: That sounds a lot like restless leg syndrome. I get that all the time at night as I try to go to sleep, and it's awful. The only solution for me is to get up and ride my exercycle for a few minutes, which then flares everything else the next day. But there's no sleeping until I can make the feeling go away. Not sure if that is what is going on with you, but I'm sorry you're having leg symptoms. They really are the pits!

Hi, Suzanne: I'm so sorry to hear that you had to stop working, but it sounds like you listened to your body and made a smart decision. Good for you!! I do the same thing - push, push, push, collapse. Even when I am in a good phase, by the end of a working day, I'm ready for bed and sleep. Working from home has been helpful because many days I'll nap during my lunch break, and I'm lying on my loveseat with a laptop all day (helps me keep my feet up). Even then my energy seems to peter out before the end of the working day. It does seem like the more we push through this the worse we feel, almost a cumulative effect. Before this, I had worked a 4 day/10 hour schedule because then I was pushing through less often, and for a while that helped a bit (but I was reeeaaaally tired when I got home!). I wish there was a way to help my boss understand, but she doesn't seem to care enough to try. Her focus is "how can you help my career," and if you're not helping, well tough luck! What strategies did you find were helpful while you were still working? Thank you so much for the encouraging words. I hope that you find a solution and are feeling ready to attack the world again soon!

Hi, cardiatec: I wasn't given any meds at all during my TTT. My HR reached the 150s on upright tilt, and my blood pressure dropped to 109/39. After 25 minutes of upright tilt, my HR and BP fell to 99 and 85/49, and I got very nauseated and hot. They ended the test there. After the clinical exam, they diagnosed me with POTS and predisposition to neurally mediated syncope. Now I'm trying to figuring out what that means exactly...

That's a good tip about Gatorade vs. salted water, Dizzy Dame. Thank you! (An old friend of mine inherited part of the Gatorade fortune and still gets a percentage of sales. Poor, poor millionaire... what will he ever do if I stop spending so much on Gatorade each month! )

Hi, April: That's really helpful, thank you. I'm still trying to understand POTS and what symptoms go with it. I've never been particularly healthy, so I get confused thinking okay I'm out of breath (or some other symptom)... which illness is causing this, which doctor does this correspond with... ha! My body has to pretty much hit me over the head before I'll listen, and boy did it ever do that. Has your treatment been helping you? I hope you are feeling better soon, too! Hi, Katherine: I am very fortunate to be near (within two hours of) a good care center, and my other doctor sent me straight there to someone who dealt with POTS every day. I couldn't figure out what the doctor was trying to communicate about work, but it certainly left me baffled. She was a very kind and attentive doctor, so maybe we just got our wires crossed. I know I could work if my office could just give a little, but this constant fight can't be making my health any better. Unfortunately, my husband left his job last year to pursue a new career in academia, which is like starting from scratch. My salary is the key to our survival. Otherwise, I would just throw in the towel and take a year off. My boss has the future of me and my husband in her hands, and frankly, I think she likes it. If I could just find a way to become more consistent, we'd be so much better off. Thank you again for your replies. It's so thrilling to hear that you are ready to go back to work full time. Best of luck to you when you decide to do so! Deucy

I'm pretty new to salt-loading, but here's my regimen: Drink Gatorade (64 oz) - equivalent to almost a gram of sodium Eat high sodium foods - Campbell's soup or Ramen's both have about 800 mg per serving - a meal is about 1600 mg! Boston Market frozen dinners (for me) or other frozen dinners are loaded with sodium. Triscuits, Saltines, exchanged pudding for ice cream, and ham and cheese on a bagel (lots of sodium in that simple sandwich - about 1400 mg). You should have seen their faces at the deli when I asked them to check which ham had the HIGHEST sodium! Googling for "sodium content in food" is helpful... I just eat everything they say to avoid. Here's a really good link: http://www.umext.maine.edu/onlinepubs/htmpubs/4059.htm I tried salt tablets, but they made me too nauseated. My doctor prescribed the high salt diet because my blood pressure was low to normal. It's important to have your doctor okay a high sodium diet since that can result in or drastically worsen high blood pressure. A normal diet is about 2,000-2,400 mg; mine is supposed to be about 10,000 mg. I can usually eat and drink between 4,000 and 5,000 mg a day if I try REALLY hard.

Hi, Katherine: Thank you so much for replying! I am seeing a specialist who is one of the top four researchers in the country. Mainly, his fellow has worked with me. I saw the specialist for about 5 minutes. They started me on fluids and salt tablets, but the salt tablets didn't go over so well with my body, so I'm just eating lots of salty foods and drinking 64 oz of Gatorade a day. After a couple of weeks of that, they started me on 2.5 mg of Midodrine 1 x day, the next week 2 x a day, and starting today 3 x a day. That's about it besides all the meds I am on for fibro and asthma. It's so good to hear a success story and how wonderful that your work has helped you out! Thank you, again, Deucy

Hi everyone. I was diagnosed with POTS a little over a month ago and am new to this forum. My main symptoms are extreme fatigue, exercise intolerance, shortness of breath with any exertion, tachycardia, blood pooling (legs, feet, and hands turn purple), and cyanosis of the nail beds and lips. I have no idea how long I have had POTS. I have been blacking out since I was 10 (now 32), which they tell me is actually pre-syncope, and also was diagnosed with asthma in 2005 and fibromyalgia in 1992. Two years ago I switched from a private industry job to a federal position because the regular hours were better for dealing with fibromyalgia. That way I could work *just* a 40 hour week and still excel in my field. In July of this year, when I was getting really sick, I begged my boss for an accommodation of a very flexible schedule that would allow me to put in 80 hours each two-weeks without a strict requirement for x hours per day and to be allowed to telework when I wasn't well enough to come in to the office - all within normal office policy. Based on a doctor's note, they let me telework all but one day, when I have to be in the office. With this schedule, I've lost thousands of dollars in unpaid leave. I rarely can get into the office, so that day is always shot, and the number of hours I can work (even from home) in a day always varies, so that's more hours lost. My accommodation request is now at the appeal level (after three denials from my boss), and if this is denied, the next step is an EEO complaint. All of this saps what little energy I had in the first place, which makes me less able to do my actual work. To me, the request seemed reasonable and even beneficial for my employer since I would be available more often. It's been a very bitter battle with my boss - even fabricating stories about my performance and ethics to make me look bad. Am I being unreasonable, expecting too much? I really need a sanity check. I'm drowning at work - falling so far behind. I love to work; it's my life. I had been the "golden child," always working over and above what was expected, recruited by my boss's boss for special projects. Now, I'm the "problem child," and everyone has turned their back on me. I just don't know what to do. I'm so grateful because at least I still have my job, but I'm resentful, too, because my boss has no empathy at all. I feel like I am fighting this battle all alone. I probably don't have the right to be resentful, but when you are barely making ends meet and someone has the power to help you but refuses, it's hard not to be upset. Am I just a wimp? I've never considered myself a malingerer. I work through just about anything - colds, flu, pain, you name it - but this mind numbing fatigue is too much sometimes. Do any of you have any strategies for maintaining a normal, predictable schedule? Am I blowing this all out of proportion? I asked my neurologist about work, and she said that POTS doesn't preclude you from working, just some people will work through more than others (some people will stay home if they feel a little sick while others will work through feeling very sick). I've always been the latter, so why can't I get on top of this thing? Any advice or personal experience you could share would be so very helpful. I'm feeling pretty lost right now. Also, I've read those that have POTS without a known trigger are less likely to recover than those that develop it after an viral or bacterial infection. Is that true? I don't even know which category I'm in! I guess I need some solid footing to be able to fight this effectively. Thank you, thank you, thank you for helping.