Poohbear

Hey Em! Yes, apparently the ANS disorders do have a direct relationship to not sleeping or not getting restorative sleep. I have just started working with a really good sleep specialist and we've had some interesting discussions. The problem is, I don't think there is much published research yet on people with POTS, OI etc but I will send you a journal article that may help you a bit. Have you ever had your catecholamines drawn? If so, did it show you were hyperadrenergic? If that is the case this journal article may help you even more. PM or email me to let me know how I can best get this to you. I can fax it; I MIGHT be able to scan the article and send it via email attachment or if none of that works then I can send you the abstract link and maybe your Dr can get access to the complete article or you could take it to a medical library and ask them to print the full article for you. Do you live near any medical libraries? Here is the link for the manufacturer of Ambien that gives the app for assistance however, Ambien is not included in the drugs that they provide assistance with. However, you may want to call this number and explain your situation and see if they have any advice for you. http://www.needymeds.com/papforms/150.pdf#...assistance'

What you are saying is correct. On paper SSDI says you can work and earn some money however, it is also true, even under their ticket to work program that this has caused more grief for the people who have tried work even just a few hours a week. Especially if you are going to do a clerical type job from home---they will most likely attempt to use those skills to show you meet the definition of SGA and thus, discontinue benefits. It does work really well if you think you can transition from being on disability to working enough hours to make more money than you would on SSDI/SSI but if you are not able to do it past your work trial period then they use the work history against you. I, at one point was able to successfully return to work for nearly 5 years (of course I lost my SSDI monetary benefits but I remained on Medicare) however, once I got worse to the point I could no longer work I had a much more difficult fight getting my benefits reinstated even though I qualified. The SS office also told me to absolutely stick with the reinstatment because a new claim would definately be denied as they would view my attempts at work even harsher against me. I have been through this nightmare myself in the past. Also keep in mind that your work trial period is cummulative over time as well.

I would say a misinformed Dr is worse. #1 Because it means at least the "teacher" was also stupid. #2 It's harder to get Dr's to "unlearn" their misconceptions than it is to teach them proplery up front. "Uneducated" is an easier solution to solve than stupidity or blatant disrespect

Hair loss is also a common problem with thyroid problems

This is from the Soc Security website under SSI eligibility. I would be VERY careful about trying to work if you are so limited because though Soc Security says you CAN try to work, it also true they usually use your attempts to claim you can work more and thus don't need the assistance. A note for people who are blind or disabled If you work, there are special rules to help you. You may be able to keep getting SSI payments while you work. As you earn more money, your SSI payments may be reduced or stopped, but you may be able to keep your Medicaid coverage. You also may be able to set aside some money for a work goal or to go to school. In this case, the money you set aside will not reduce the amount of your SSI. Blind or disabled people who apply for SSI may get free special services to help them work. These services may include counseling, job training and help in finding work. You can get more information by visiting our website at www.socialsecurity.gov or calling us toll-free at 1-800-772-1213 to get a copy of Working While Disabled?How We Can Help (Publication No. 05-10095).

Metoprolol is the only thing I've been able to take that helps me at all without causing major side effects although I've had to go with a compounding pharmacy to get a lower dose than what is offered in the manufactured pills. It is my "rescue med" though and has been my little miracle. I also wanted to caution you; I think someone else suggested maybe talking to your Dr about splitting the dose. Tenormin is a LONG acting BB but Metoprolol is a short acting one so splitting the dose may or may not help you and you may need to take it more frequently during the day to get the benefit you need. For me what worked was taking a very tiny dose every 4-6 hrs but we are all different. Metoprolol does clear your body fairly quickly though unlike long lasting bb's.

I have been diagnosed with various forms of Dysautonomia for around 10 years now. Initially I was told most POTS patients improve and in fact, I was told that all the way up to about a year ago. Over time I have slowly gotten worse and very little has helped me attain a greater quality of life. I recently questioned some of the "experts" in the field about this, referred them to the old journal articles that discuss improvement in most patients and I asked if they still believe that to be true or if, after researching a larger number of us they have changed their minds. At the time the journal article was published stating most improve they hadn't actually studied very many people. The answer I got was that #1 They defined improvement to be ANY change for the better but that does not equate to improved quality of life or function as a "normal" person (ie.. hold down a job) and #2 He said they now realize that at least the people they see in the research clinics, (Mayo & Vanderbilt) they do not see major improvements in that group of people (generally speaking). We did discuss the fact that this is still somewhat scewed data because the people who go to these facilities and are accepted are generally the ones who are more impaired. They don't take the folks who are too ill to be off meds so you have to keep that in mind as well. I was reminded that there are probably many reasons why people get these syndromes and that each specific reason probably has a different outcome. With what they currently know, it seems those with a viral form do still have the greatest chance of "most improvement" those of us with genetic reasons do not have great improvement (although still may have some).

Just a thought but do the owners of this site or the moderators have access to her address?? Maybe someone could mail a card just letting her know people are thinking of her and worried (in case her email changed or something). Maybe something would get through via snail mail.

http://www.temple.edu/heart/html/tachycardia.html

This was printed in the Vanderbilt Reporter Friday 6/16/06 www.mc.vanderbilt.edu/reporter Family History of chronic pain not just 'in their heads' by Melissa Marino Chronic pain seems to run in the family--if one or both parents have chronic pain, the child is more likely to suffer from it as well. While this trend was previously explained by psychological factors, new research is pointing toward a biological-and perhaps genetic- basis. To read the rest of this article go to http://www.mc.vanderbilt.edu/reporter/index.html?ID=4825

Hey girl! Thinking of you and sending lots of hugs your way. I do understand and relate to your talking about how you feel isolated here, at least to a certain degree, because your diagnosis is different than the average person. Please remember though that there are at least a handful of us that are dealing with many (certainly not all) of the same issues you are. It just seems to be a small percentage---good for them but frustrating when you are trying to find people who truly 'get it' I know!!! I'm sure you know you are missed and cared about here (and it never hurts to remind you of that either ) I'm only a phone call away

The TTT is NOT a DEFINITIVE test!! I keep seeing that pop up on this site and it concerns me because it is not true. It is the most common test, it is useful but Physicians and patients alike need to rely on more than just this one test for a diagnosis. You really need a combo consisting of orthostatic readings, the "poor man's tilt" (In fact, Dr. Streeten got to the point where he didn't believe much in the TTT because there are too many false positives in totally healthy people), catecholamine testing, autonomic function testing (such as the valsalva, cold pressor etc), and your symptoms. The % of false positives and false negatives on the TTT is very high, especially when drugs are used in the test, so clearly it is not wise to use this test as a definitive diagnostic tool in and of itself. Some Dr's may use it as their 'definitive' but I would be leary if that was my Dr. The other problem with the TTT is there is no standard for how the test is conducted. It is a test that is useful and helpful to make a diagnosis but all of the top researchers in the field of autonomics will tell you that you can't rely on the TTT alone to make a diagnosis.

This doesn't sound like anything new to me. It sounds like the same testing and equipment that Mayo, Vandy, Hopkins have been using for years.

Yep....I've had these same type of symptoms in the past. I do pass out with no warning sometimes so I am no longer allowed to drive.

I doubt the two are connected. It is the most common hormonal disorder among women and it's roughly 1 in 10 women of child bearing age that have POS thus, most likely it's just coincidence that one would have both POTS and POS.

Epinephrine is technically a hormone whereas norepinephrine is a neurotransmitter used by the sympathetic nervous system. I believe they are structurally very close (obviously not identical though) and they are both part of the "fight or flight" reaction. Off the top of my head from memory...the only thing that comes to mind is that they BOTH have a role in increase in heart rate, force of heartbeat, blood pressure. Norepi has more of an impact on sodium retention and epinephrine has more of an impact on blood sugar and loss of potassium in the blood stream.

My understanding is that this is a benefit only going to the Leary Firefighter's Foundation to fund rescue boats and prepare new orleans firefighters for this upcoming hurricane season. This does not appear to be a "general" fund...it's only for the non-profits' the apprentice has already chosen

You may want to check this link out. This is a product that I think many of you will like. I have a neck/shoulder wrap made out of this same material that you just keep in the fridge and it works very well and stays cool for a long time. I'm sure other places sell this same product but this link is just to give you the idea and materials used. You can probably buy the crystals that are used and make your own if you know how to sew. http://www.qvc.com/asp/frameset.asp?nest=%...on&SearchClass=

Sorry you had such a rough time. Sounds like you have a good plan in place though so that's a good thing. I hope you are able to manage the pain and have a good weekend.

Laura, I'm sorry you are having such a hard time. It is hard to hear of all the activities others can do when you want so badly yourself to participate!! Then you think of all the things you used to be able to do and that's sad too. You aren't alone in this! Try to find things that pass the time...funny old videos or something.

It really does depend on where in the U.S you are as to what kind of bilingual services will be available. Generally speaking, if you are in the Southern states you will find many more Spanish speaking staff. Do you know what states you will be traveling in? If you do, and you want to list them I might can help you locate some resources. (I've traveled a lot and been sick and hospitalized in many many places) Either way though, it's safest to try to get everything printed out in English. The last thing you need is a communcation barrier in the middle of a crisis; it can really delay your care. I would not expect that most Dr's here in the U.S. (especially in an emergency room setting) will know anything about POTS. A few do, most have not heard of POTS. Therefore, if you can, print in English on your paper not only what your condition is, but tell them what you are most likely to need. For example, you may want to put something like, I need IV Saline, check my potassium, I may need oxygen. Like others mentioned, list the medications you are on, the doses and how many times a day you take them. Also list any allergies you have. You may want to print a couple of copies of this http://www.dinet.org/pots_an_overview.htm to carry with you (give one to your Mother).

Are you on a bb? I ask because they use bb in some people to prevent migraine so if you haven't discussed that with your Dr that may be an option. Some people do best with a combo of meds so maybe you need midodrine with a bb

So sorry to hear this. I'm thinking of you!

Just so you know....There is a difference in Naproxen Sodium vs. Naproxen. Naproxen is NOT available OTC. It's rx only-- usually under the name of "EC-Naprosyn" or "Naprosyn" So, while I understand you can't take Naproxen Sodium, the Naprosyn may still be an option to consider. Good luck!

I'm so sorry you are dealing with this kind of pain!!! I don't have much advice for you because I'm one of the people who can't tolerate meds very well at all. Can you try a different class of pain reliever? I find that sometimes Aleve is more effective for this type of pain. My PDR says to avoid the delayed release or enteric coated products (for Naproxen) for initial treatment of pain because compared to other naproxen products absorption is delayed. You may want to call your pharmacist to #1 ask if Aleve OTC would work (that it's not delayed release or enteric coated) and #2 tell them how sensitive you are to meds and hr and bp issues and see if they can recommend something that might be a "safe" try. My only other thought is that sometimes I battle with trigeminal nerve pain and the dentist visits will make that much worse. If you have any of that type of pain (nerve pain vs. inflammation of muscle/tissue) then what worked best for me was liquid nortriptylene in a tiny dose; however, it takes several days to possibly a few weeks, to build and be effective in your system. I sure hope you find somethinng that works. It can be difficult to control pain once it's flared so bad and I hate that you are going through this!