Heiferly

Ernie, First of all, I want to say I believe you and I am so sorry and words fall short of ever being able to communicate in this kind of circumstance. But I am thinking of you and sending you love and hugs and support. Secondly, where are you? Are you in the US? The woman from the hospital really seems to be lying or not know what she is talking about. You have the right to say who cares for you and if you have a history of sexual trauma, it is entirely not unreasonable for you to request that in the future only females help with your personal hygiene. That is your right as a patient. If you are in the United States, there is free legal aid if you need help. I don't know about other countries but maybe others can help. Patients do have rights. Love, Heather.

I am one of the people who had sudden onset of POTS, and I had issues with episodes of paralysis on top of it, so the severity was pretty bad right off the bat. I tried to return to work after it started, but realized pretty quickly that it wasn't going to be sustainable as I was being sent home from work early often and missing work because I was blacked out or paralyzed on my apartment floor. I stopped working and my three-month savings buffer lasted four months and was gone; I applied for SSDI, SSI, food stamps, medicaid, cash assistance, about 10 different Rx assistance programs . . . if there was an application form, I filled it out just in case I might qualify. I think I started filling things out before I had even drained my finances and enough time had passed to submit them, which was just as well because it was a *mountain* of paperwork and all of that stuff moves SLOWLY. It would be an understatement to say I have been very fortunate. I was approved for SSDI, food stamps, and medicaid the first time around. (Rx assistance programs helped bridge the gap until medicaid kicked in, but medicaid will go retroactive to the date that SSDI sets as your date of disability. SSDI set mine as the actual date I first became ill. This is a saving grace for medical bills, though the SSDI checks won't go back and pay retroactively.) My condition has worsened over time, and I am now getting approved for home health services through a medicaid waiver: a visiting nurse, nurse's aide, occupational therapy, physical therapy, aquatic therapy, and a shower chair. There are several things that have worked to my advantage in getting assistance: 1. When filling out forms, I attach extra typewritten pages to answer questions AT LENGTH rather than in the small blanks given (esp. on SS disability application) to give vivid examples of my situation to make it real for the person reading it. This is not a common thing that the person evaluating the application can understand just from reading a diagnosis. I figured it was my job to make them see what I was going through and how it kept me from being able to do my job OR ANY OTHER JOB, or even function normally in life. This is no time to be proud or keep your confidentiality. Tell it like it is in the goriest most demeaning details. 2. I am single and I had no assets (house, stocks, etc.) except for a car, and I rapidly drained what little savings I had such that I qualified for programs of financial need, such as medicaid and food stamps. 3. By the time I applied, I did not have a diagnosis but all of my doctors/specialists were through one of the nation's top research university hospital systems. To put it bluntly, I truly believe that who your doctor is can make a big difference. I imagine Mayo Clinic and Johns Hopkins docs (of course with the caveat that they agree that you are disabled) compose very impressive letters on their patients' behalves. They are, after all, the best of the best. Whereas a small town doctor who sees many less patients, encounters social security less frequently, got a less impressive education, has much less continuing education . . . well, he may just not know how to write things up in the way that Social Security responds to them. KNOW THAT YOU HAVE AT LEAST ONE TRULY EXCELLENT DOCTOR WHO IS REALLY GOING TO GO TO BAT FOR YOU AND TALK TO THEM ABOUT IT! There is nothing wrong with telling your doctors that you are applying for disability and asking them if they are willing to help you. Talk to them about what is keeping you from working. They don't see you at work or at home--they won't know what's going on if you don't tell them and give them specific examples! 4. When I was working, I worked as a medicaid provider. I already knew their language, at least to some extent. It really pays to do your homework. Appeals are a royal pain in the arse. Know what you are applying for and what the standards for approval and denial are. This information can generally be found online for government programs. Google is your friend. Make sure that what you send in demonstrates that you meet the standard for approval without a doubt. Make sure you have communicated to your doctor how you meet that standard. For disability, frequently there will be a list of diseases (which doesn't include POTS or other dys) or a stipulation that it must be something "equivalent" to one of those diseases. If you have POTS, for example, you could make sure that your doc is aware of the journal article that compared the quality of life in POTS to that of congestive heart failure. It would be very helpful for your doctor to cite this in his communication with SS! Another buzz word in disability is "activities of daily living." You don't necessarily want to use their jargon, you just want to know what activities they are looking for so you can address these things when you apply, if it has been effected by your illness in some way. I hope that helps people who are applying. I would be happy to answer questions.

PowerAde Zero has none of the sugar (no calories, thus the "zero") but does have sodium, potassium, and also B vitamins. I drink it like it's my job. In the winter, drinking hot vegetable broth is a tasty way to keep warm, and packs a punch of salt if you're trying to salt load.

I do not know the cause of mine. All I know is that, you know how they say some people with POTS have gradual onset and some can tell you the exact day it started? I had a sudden onset. I mean, I know the MINUTE I got sick and the entire progression of it that day. But I don't know what happened that day to make me sick. I'm hoping when I go to Dr. Grubb's clinic, he might be able to figure it out, because he's such an expert. But it will be a long wait for the appointment because they're so backed up and he's sick right now.

I can't even vote. Things seem to work for a while, then my symptoms shift and some become more prevalent while others become less prevalent. Overall, my ability to function has gone downhill. I quit smoking in June because of a cancer scare (some pre-cancerous growth), and quitting smoking seemed to make everything WAY worse. The medications that were working suddenly weren't. Smoking constricts your blood vessels, so I guess that makes sense that it would actually help with the POTS in a way. I'm not saying I want to go back to being a smoker, but factually, it did make my POTS worse and none of my docs have chimed in to disagree with me on that point, not one. But the meds aren't entirely not working, because if I don't take them, things are even worse than they already are. So I guess they're dong *something.* My "lifestyle changes" prevent me from having daily syncope, but they don't give me a LIFE, just an existence. You know? And I still feel sick every day. Sorry, I'm in a really sour mood today and I shouldn't be dumping it on you all.

How long did it take you guys to get relatively stable? I was averaging 2x/week syncope over the summer, and in the cooler months it's average of once/week. On top of that, seizures are still about monthly (tonic clonics). And occasional falls from sudden leg paralysis. Then I've got all the chronic symptoms in between the acute episodes. Is there still hope that I'll be able to get things under control in the forseeable future? Because right now it just seems (to me and my family) like it's just getting worse and worse.

Hey (new here, thought I'd chime in b/c I've had similar experience), I know what you're going through with the low HR overnight. A couple weeks ago I went into the ED with a bad bout of tachycardia and chest pains that the on call cardiologist was concerned about and told me to go to hospital. I got admitted and ended up being there for about a week, over the course of which I was pretty severely laid out. Not a flu, though, just a particularly bad run of POTS symptoms. At any rate, over night both my HR and BP were going really low--enough that the nurses and PCAs kept re-checking their cuff to make sure it wasn't broken LOL. It felt AWFUL. I agree that I'm comfortable in the 60s or 70s. When it starts to ramp up and go tachy I get that tightness in my chest, and now more recently actual pain. And when it drops into the 50s or 40s it's a strange feeling, but more difficult to describe. I feel like I'm sort of suffocating and I feel extremely weak--it's definitely unpleasant to say the least. Incidentally, when I'm in a bad spell like that, I've found that I don't need to stand up to set off the tachycardia . . . sometimes merely sitting up will shoot it up to 100 or more. I've been instructed by the hospital, my own cardiologist, and the pharmacy to skip my dose of beta-blocker if my systolic is under 90 or my HR is under 60 because the beta-blocker can further lower them. Do others take beta-blockers regardless of how low their BP or HR is at the time? Does it drop your BP/HR? (I take metoprolol; don't know if different ones don't have that same effect?)