Poohbear

I know....it's awful the ways we are forced to spend our energy sometimes. Please keep us posted so that others can learn what to do if they are ever in your situation. You probably already know this but document everything, date, times and who you spoke to. Anything you mail, mail it certified, return receipt requested, keep copies of everything Good luck

You may want to contact the American's with Disabilities sites and ask them about it. I agree with the Lawyer though, your first step is to file locally. Until/unless the landlord doesn't abide by notification by your state nobody may be able to do much.

Glad to hear you are feeling a little better. Hang in there....it may take longer than you want but you WILL get that degree!

http://www.mayoclinic.com/health/autonomic...0544/DSECTION=1

It would be nice if some of this research you mention is actually published. So far, you keep talking about this research and saying articles are pending but nothing has been printed or proven.

Are you able to get your Dr to consult with Dr. Grubb or one of the other Dr's you've seen in the past? Meanwhile, what about trying the techniques that Mayo and Vandy outline for times when you know you need to stand a litte--which is drinking 1-2 bottles of 16.9 oz each of water within a 10-20 minute time period and making sure your sodium intake is between 8,000 -10,000 mg a day. Other than that, sometimes when my blood pressure gets really low a little caffeine will bring it up I know how miserable you probably feel!! Hope you get some resolution soon. Hugs

Hi Julie, I certainly hope you have a good appt and are able to get your questions answered! Keep us posted

You did a good job explaining it to us! (Of course we may understand on a different level too). How about approaching it from the standpoint that you are struggling to remain functional and working and you would like his assistance in accomplishing these goals. Let him know how symptomatic you get walking and tell him you would like his assistance in getting a handicap tag/sticker to see if reducing your activity level will help you stay safe and able to work better and more functionally. You may want to call or go online to your local DMV. Where I live there was a simple form the Dr filled out which I then took to DMV to get the tag I needed. If you have the form with you to present at your appt that may save time. Good luck and keep us posted

Hooray!!!!! I'm so glad you are done with the radiation. What a trooper and an inspiration you are. I know you've had a tough time. Even though I don't "talk" with you much you have been in my thoughts and prayers so many times. You will continue to be in my thoughts. I hope your hydration and POTS issues improve as well

I have a medical id bracelet as well as Medic Alerts new "E-health key" http://www.medicalert.org/E%2DHealth/ My meds change so frequently that I find the e-health key great. Since many EMT's and Dr's don't know about this new product yet I have my id bracelet read "See Card in Wallet" or "See Medic Alert on Keychain" then, in both of those places there is more info. My bracelet reads "Pacemaker; Allergies; see card in wallet/keychain". I have too many allergies to list on the bracelet so this gives them some info and directs them where to go for more (in addition to the tollfree # and my medic alert file # they can also access if needed)

Hi! I'm very sorry you are having such a rough time right now. Please try not to feel like you are being a "downer" because you are asking for support on Easter....it's a holiday but all of us here know that our bodies don't distinguish special occasions like our minds might . I can hear the fear and frustration in your post too. I wish I had some good answers for you. We are all so different. For myself, when I have flares similar to what you are describing it is sometimes made worse because my potassium or magnesium are low (even the low side of the "normal range" are bad for me and cause me to be symptomatic). My thyroid and other hormones can also play a factor. I'm assuming since you were hospitalized they checked all of these but I hate to assume anything these days within the medical community. You may want to look at copies of the labs yourself to see if you are on the low end of any of these tests. If your potassium level is good then trying the Florinef again in the lower dose may help you. In terms of the fear you feel and not wanting to be left alone--I've been there too. I live alone so most of the time I have no choice but "go it alone". The things that help reduce my anxiety are coming to sites like this and chatting with others, writing, watching tv, putting puzzles together, coloring.....things that help distract my mind and keep me busy. Granted it's much more difficult when you are in high tachy spells and need to lie flat. If praying is not your thing or doesn't help then maybe try daydreaming. Many times with fear we have to push through it. Your fear is understandable and yet, most likely, your husband won't always be able to be around you so plan for your safety as much as you can. Maybe carry your portable phone and/or cellphone with you at all times...think of things you can do so that you can get help quickly if you need to. If you are prone to needing to call 911 then go to your local ER responders and explain your situation so they will be a bit familiar with you. I hope something I've said here will help you. Please know you are not alone!! It's hard when you experience spells like this but you WILL have better days so hold on.

Happy Birthday!

Dr. Low has was "ok" the first time I saw him in running tests but he did not spend much time answering my questions. When I've emailed him asking he coordinate with other Mayo Dr's regarding my gastrointestinal problems and addressing the nerve pain and neuropathy I'm having he told me those had little to do with autonomic function. Even though he told me to return in a year he now is saying there's nothing he can do for me. I also saw Dr. Benarroch. He was good. I think you may have better luck with someone other than Dr. Low if for no other reason he's gone a lot more than the others.

My local cardiologists still say they expect me to improve within 5 yrs (because this is what they read in the papers by the 'experts). However, I really don't understand how they can still say this to me because #1 I was diagnosed 10 yrs ago and have slowly gotten worse over the years and become more disabled--not better and #2 I've been seeing HIM for over 5 yrs and tried every med available. Mayo Clinic told me "Hopefully you will improve in time however some people make great improvements and those tend to be people who got this Post viral" Vanderbilt told me that because it appears I've had symptoms most of my life and I've gotten worse over time that it appears my case is certainly not post-viral. While they still offer hope that I may improve (they state improvement will be based on finding a combo of meds my body will tolerate) they also told me that when they publish or say "most patients improve" that it is a very broad term. They told me I should expect improvement but maybe not to the point I can function the way I want or engage in the activities I want to. What 'irritates' me is how most Dr's are misinterpreting the "most patients improve within 5 yrs". I think they need to clarify that improvement many times does not = a normal quality of life.

Gena, Sounds like your surgery is intended to be minor so I wouldn't think you would need much "intervention" in terms of consistent monitoring etc unless you decide to have the general. Usually with Light sedation you are MUCH better off. Talk to the anesth. if you are sensitive to meds, make sure they don't use any numbing agents with epinephrine in it. Other than that, if you have a tendency to dehydrate you may want to ask your Dr about getting a bag of IV saline to "boost" you a little. With the light sedation I would think you will do fine you may just want to make sure they allow you lay flat and rise slowly after surgery and allow your body a little extra time to adjust. Try to have pain mgmnt plan for after surgery worked out ahead of time since pain can aggravate symptoms.

I have Hashimoto's too and it really messes with my POTS. I am fortunate enough to have a really good Dr that looks at my lab numbers as well as my symptoms and tries to adjust my med according to all of that. If you want to know more about your thyroid status you can ask the Dr to run the antibody test next time you have blood work. My antibodies always come back too high to count. The lab value around here says the antibody test should be lower than 35 and mine always read greater the 3,000!!

I hope you can find a way to continue singing and playing piano!! I am not able to sing much; I get light headed and my heart rate and bp really get messed up. I used to play clarinet and french horn and I'm not able to do that anymore either....makes me incredibly sad sometimes and it's something I loved and miss terribly. I use to play in a large city orchestra and I don't know if my heart will ever heal from the sorrow of not being able to play anymore.

Gena, You may want to take a look at this link http://www.dinet.org/links.htm#anaesthesia Good luck with your procedure. I don't do well with surgery at all so if I was in your shoes I would opt for the light sedation because those meds tend to clear your body quicker. However, we are all different. Hopefully you can print something from the above link and see "What to avoid" under the POTS section of this website too and that will help your Dr. Let us know how things go and what you decide to do!

Hi Everyone! Thanks for all the responses. My point here (although I may not have done a good job of expressing it) is that I do believe I have POTS but the more things that go wrong with my body that are controlled by the ANS system the more I feel like most of these Dr's are too narrowly focused. I think my POTS and other problems are being caused by a larger, more complexing problem of the ANS and that POTS is a symptom of whatever that other thing is. Like Jennifer said studying and researching the ANS and its controls instead of just POTS seems like a better answer for at least some of us.

Glad you got a reply. FYI....One of the other 'top' facilities that has a research center for folks like us warned me that if I needed to go through their ER that most likely the ER staff would be clueless about my disorder. They specifically told me I would need to tell the ER staff to contact them. Another case you wouldn't expect it since their center is PART of the hospital. Again, glad you got a response though

Mary, I'm sorry life is so tough!! You and your daughter deserve better than you are getting. I sent you a pm

You may want to do a search for old threads on anesthesia. I'm glad they caught this early but I can imagine how scary it is for you. Can you ask them if a local is possible instead of knocking you out? Please keep us posted on your progress

LOTS of people have MVP that do NOT have dysautonomia or autonomic symptoms

Hey Sunfish!! I'm glad to hear you're "holding your own" but so sorry that you are having to deal with all of this. Hang on and make YOURSELF the priority. I know you want to get through school but take it easy if you need to and make them work with you. Hope the Dom. works well for you and I'm glad to hear you're able to get a hold of it.

Futurehope, My neurologist does agree that POTS is an ANS disorder. He just says this type of thing doesn't fall into treatment by a neurologist. I do agree that most neurologist (and for that matter Dr's in general) are NOT trained to deal with disorders of the ANS. However, I still get frustrated that when it comes to folks like us there is no "one" Dr who truly understands and treats the condition. Instead, they all want to treat the symptoms which doesn't really ever get to the root of the problem.