Poohbear

Julia, Just checking in on you! How are you doing? Are you feeling any better these past few days? I hope you are feeling much better and have more energy

I grew up in Richmond, VA!!! Welcome to the site!! Anyhow, I wanted to let you know that after many months of my being sick it was a Dr in Richmond that diagnosed me. I may be able to help you with some local referrals that can get you on the right track or recommend electrophysiologist in your area. I will try to send you a personal message. Also, there are some people who've gone to UVA in Charlottesville. Would that be a possibility for you?

I don't really have more to offer in terms of advice than others have already suggested but I just wanted to say I'm sorry you've been so let down and disappointed. Hang on to your dreams and keep working to reach them!! Try to view this as a setback and not a "this will never happen". It may take longer for you to reach your goal since you have to secure additional funding but you can make it happen!!

I agree with Nina. Especially given that your son is only 6 I think it's really important to get him to a Dr to be evaluated. There are so many things it could be. Has he been diagnosed with a form of dysautonomia already?

Check this out http://www.salivatest.com/store/zrt_facts.html I found it difficult to find a Dr who would order this test for me; most were 'stubborn" and didn't want to read up on this or assist me. I did finally find an OB/GYN who specializes in hormones and prefers using this testing method and says she's had 80% greater success in effectively treating patients symptoms using the saliva testing vs. blood test. So far it's working well for me. Even if your Dr won't order it you still can order the kit yourself and pay for it and the lab will send all the stuff directly to you. I think it's about $170. I am unable to take even the very low doses of bc pills so this has been a helpful option for me.

I have to eat bland foods often too although I am allergic to bananas and applesauce so I tend to eat mashed potatoes, rice, pudding of any flavor, chicken noodle soup, potato soup and once I get to feeling a bit better I can add chicken breast or turkey.

Are you sure you don't have asthma...maybe even mild and you just don't recognize the symptoms? I had something similar to this myself and it turns out I have a very mild form of asthma but I think since my body is so incredibly sensitive my symptoms were "dramatic" given that it's mild asthma. I am now on an asthma preventative inhaler and waiting to see if that helps. Two things that stick out to me on this is #1 ask your Dr if there is another medication you can try. B Blockers can exaccerbate asthma and it might be worth switching meds to see if you get any relief at all. #2 have you had a pulomonary/lung functioning testing #3 Could it be seasonal allergies? If it's really humid there may be lots of mold around you. Good luck!

I get much worse 7 days prior to starting and then they day/day after I start and then again toward the end of my cycle. I did a saliva hormone test (which is more accurate than blood test because it test the fluctuations of hormones at various times of the day in certain phases of your cycle AND it test the amount of hormone available for your body's use..which can be different than the total amount shown in blood work). You can check out ZRT Laboratories for more info. For me, having the saliva hormone testing was a blessing. I found my progesterone was dropping too much and I am now on a compounded progesterone cream I use 12 days a month and it's helping me less symptomatic at those times.

Has the cardiologist recommended anything, tried any meds, done any other testing? What are you symptoms. If you are new at looking into all of this you will probably be most helped initially by a electrophysiologist (specialist in cardiology field) and a Neurologist. If you get a diagnosis of a form of dysautonomia then the other specialist may be helpful in treating other symptoms.

I have a Lumiscope automatic bp arm cuff that is very accurate. I tried several wrist ones and they were not accurate at all. But...the best advice is what others have said, purchase one, take it to your Dr to test the accuracy and keep the receipt in case you need to return it. In terms of the heart rate watches I have tried several and taken them to Dr' office to test for accuracy and NONE of them were even close to accurate. So I havent had any luck with the HR watches. In terms of how often to use them. I find it's best not to check too much. I check first thing in the morning, sometimes in the evening but for the most part I only check if I'm having a particularly bad episode or if I've had multiple "storms" back to back.

six weeks sounds like a long time given all that has gone on. If you can't get him seen sooner though eating lots of potassium rich foods may help. Along with the others already mentioned, orange juice is high in potassium, broccoli, cauliflower, sweet potatoes and white potatoes too. I'm glad he is doing better! You and your family have been in my thoughts a lot!!

I'm off to a Dr appt so I only have a minute to write but wanted to say a couple of things. 1- The Florinef may have been related to your cramps. If you take florinef you should have your potassium level checked both prior to starting and on a regular basis because Florinef can cause your body to deplete Potassium. The way Florinef works is it causes your body to retain salt and thereby fluid. Many people with orthostatic problems (shifts in BP/heart rate) need extra fluid. By indirect effect the kidneys release more potassium than sodium when on Florinef. 2- Tilt test may be helpful but be aware there are many false positives and false negatives with this test. It is a tool to help diagnose but is not a definitive answer. 3- If you are having higher heart rates with normal blood pressure readings that may be inidicative of something closer to POTS vs. NCS 4-You would need to be off all meds for a couple of weeks before getting a accurate Tilt test result. 5- When I was at Mayo clinic they did a 24 hr. blood pressure monitor test--similar to heart rate monitor only it was blood pressure. This is the only place that has ever had the equipment to do this but I would ask your Dr if it's a possibility.

My advice is to go ahead and file for SS disability as well, regardless of what your employer does. The SS process is LONG, tedious and involved it's easier to start the SS process and cancel it at some point if you need to then to wait 8 months to see if you really need it. On SS disability you have to be disabled for 8 months I think it is before they will start to pay so the earlier you start the process the better. This way, if your employers plan denies you or only pays for a limited number of months you've already got the ball rolling on the SS. The way it works is if you are approved for SS and you are receiving benefits from your LTD then SS pays first and your employer would pay only (if any) the difference from your LTD benefit and what SS pays. For example, Say SS says you are eligible for $1200 a month but you are getting $2500 from your employer. Then Social Security would pay $1200 and your LTD would pay $1300 a month. If your employers benefit is less or = to what Social Security would pay then SS would pay and your LTD would pay nothing. You are welcome to email me if you have questions. Make sure you keep copies of any and every form they send out and I would also recommend mailing anything to them via certified, return receipt requested so you have proof of them receiving info, the date and who signed. Good Luck!

April, Welcome! This is a great site with a lot of support and knowledge to offer. First off, You are not crazy or "just depressed" although, it's not uncommon to have some depression from this stuff in part because your hormones can get really messed up and also from the life changes and struggles that chronic illness bring. One thing I want to say right off is that I would advise you to really look at getting back on the thyroid medication. I have Hashimoto's and it was initially found by a rheumatologist who did some "uncommon, fancy" bloodwork and found my Thyroid Antibodies were over 3,000 (normal was something like 30 or less!!). My TSH at first was normal but my antibodies were so off the chart and I had symptoms (heart rate changes, fatigue, some weight gain, muscle aches) so they started treating me with a low dose. Over time my TSH levels started to show my thyroid failing more and we change my dose. I was one of the "backward" people in that with Hypothyroidism most people tend to have a decrease in heart rate but mine became increased and was much more sporadic. I was also told by the Mayo Clinic that often for people my age (mid 30's) they find people feel better when their TSH level is between a 1 and a 2 (this is the lower end of the normal range). I have been lucky in that I had an endocrinologist who worked with my symptoms and not just the numbers alone. Initially my TSH was 5 but I was having symptoms. Just something to think about and discuss with your physician. Have you tried increasing your fluid intake and electrolytes? (Gatorade or similar drink). It's late and I'm wiped out I've got to sign off but I'm sure you'll find lots of great support

I agree with Steph. I would do a couple of things...I would print of some articles from this site and others that show how complex this disorder is. I would share them with your current Dr. and explain your predicament to him/her. I would ask if he would reconsider filling out the form with you and suggest sending the articles to the disability review as well. I would also go ahead and set up an appt with a new electrophysiologist and explain that you need a Dr more knowledgeable about Dysautonomia and you are pushed to do so at this time because your GP doesn't feel knowledgeable/comfortable enough with the forms and your future progress and you need more help than you can get from him. It may also help if you write a letter to your GP to have placed in your file being very specific and detailed about the ways this disorder has impacted your daily life. List all symptoms you have, how frequently each occurs, what duties of your job you are not able to do and why. This way, even if he doesn't do so great with filling out forms hopefully a reviewer will still read it. What LTD carrier does your employer use, do you know? I have gone through the process already of going from STD to LTD and also SSD. One condition of my LTD plan is that you have to start the paperwork for Social Security Disability as well. Have they asked you to do this yet? If not, can you ask someone what the requirements are. If you have more questions let us know. The more detailed you fill the reports out the better off you will be. Good luck!!

Julie, Thanks for checking in on me. I'm quite exhausted today and in pain but considering everything I'm doing o.k. No, you didn't ramble last night; like you said there's just so much information...we really could all write a book with the experiences we've had!! Well, I need to re-ice my foot and get it elevated again as it's hurting more since I'm up Take care and thanks again for checking on me

Welcome to the site! I hope this will be a place of support and comfort to you!! I've been through lots of testing and like you...the disappointment of going home with a confirmation of what was wrong with me but no real solution. I've tried many many meds and they either haven't worked for me or I had side effects my body would not adjust to.

Dayna, It is normal to have the anxiety and fears especially when you feel like you are fighting so much to get well and be healthy. I've read and been told that few cases turn into PAF but I also know there is a LOT that the Dr's and researchers don't know yet. I have had all of the tests you've described and some I had positive results to and some negative. I heard Dr. Phil say several years ago something that really helped me out a lot... he said, "If you are going to play the "what if" game then play it all the way through". What he meant is that a lot of people say, What if ______ happens? or " "What if I ___________ etc etc. Dr. Phil says a lot of people stop at that point and he urges you to carry it through and make a plan for your "What if" and answer the questions. It's not that by answering all your "What if" questions you will have magic answers but you will feel better about coming up with a plan and hopefully that will lessen the fear and anxiety. It may be that the answer to "What if I have PAF?" will be "then I will allow myself to grieve my losses and then I will do what I can to enjoy everyone around me as much as possible, to get support from family and friends and I'll fight my best every day to live the best way I can and forgive myself on the days I disappoint myself." I hope you understand what I'm trying to say. I know this is no magic answer but I hope it helps in some way. Hugs to you and I hope you get the answers you are seeking!

Thanks to everyone for your thoughts and words of comfort! Nina, that sounds like a very serious fall you had!! I hope you will be okay! Emily, thanks for teaching me the scream...it really does help and brought a smile to my face. I put ice on my foot all evening and went to bed with ice on it too and that helped. The swelling isn't as bad as I thought it would be but the pain in incredible. It helps as long as I keep ice on it and keep it elevated. I can't put any pressure on any part of my foot today which surprises me since the swelling isn't too bad. Oh well, looks like I'm resting on the couch for the next couple of days. This too shall pass and I am thankful it wasn't worse! As Pooh would say, "Oh Bother!"

I passed out about an hour ago while going down the stairs. I felt it coming on and I was only 3 stairs to the bottom platform (I was at home). I think I broke 2 or 3 toes and pulled a muscle in my hip. (thankful it's not worse than it is!) I'm incredibly frustrated and want to SCREAM!!!!! I am so tired of feeling bad, so tired of feeling alone so much of the time (you guys are truly a support and a blessing to me and my life but I'm still physically alone). I want to be independent but I'm limited. I don't see the point in going to the ER or Urgent care....that would just be more $ down the drain and there's nothing they can really do for toes anyway. I can't take aspirin, tylenol or advil because of drug intolerance. I am using ice right now. Thanks for letting me vent!!

Check out this Federal guideline for Air Travel and disabilities http://www.delta.com/pdfs/14cfr_part382.pdf I got this off of Delta's website but this is the Federal guidelines. In terms of vacations I guess my first question would be do you want to drive or fly? If you want to drive, what part of the country are you in? Last year I went to the Mayo Clinic in MN at the end of July/beginning of Aug. Obviously, I wasn't there for a vacation but I felt SO much better there because it was much cooler than where I'm from and it was not humid at all. (I live in the deep south where it's hot and humid). I have also been to Lake of Bays Canada in August and it was a great place. Quiet, beautiful and it would warm in the day enough to swim in the lakes in the afternoon but at night it was cool where you would want long sleeves. If you wait and travel in the fall it may be cooler and feel better for you but that may be more difficult if your kids are in school. If you aren't used to higher elevations I would stay away from those as that could exaccerbate your symptoms. How old are your kids? I ask because that can make a difference as for what is fun for them to.

My thoughts are with you and your family and I hope your Grandfather starts improving quickly. I know it's hard to make decisions, especially at a time when you are in crisis! In terms of suing it may be warranted but, I wouldn't jump into it just yet. I say this simply because if you start the legal process now and the hospital/Dr's hear of it your Grandfather may not get the care he deserves. I'm not saying that it's right or fair but our world is cruel and evil sometimes. Instead, I would try to "fight within the system"....be as sweet as you can, ask for a patient representative or advocate, see if you can start to get copies of his complete medical records (lie if you have to and tell them you want to send the records to a specialist for a second opinion). Ask if you can meet with the Dr. and question why his electrolytes weren't checked prior to his being put on this medication. Write down what he says so you have a record of it. You may want to consult an attorney at this point for advice though. I agree that waiting until the day you have to decide about your graduation is the best thing. A lot can happen in a few days. When the time comes try to make your decision on what you feel is best AND what you feel will leave you with the least or little regret. Maybe your Grandfather will be better but not well enough to go so you will have to decide what is best and maybe he would want you to go and take lots of pictures you could share later or maybe, the graduation ceremony isn't that important to you so missing the event would not bother you as much. It's a very personal decision and I can appreciate your struggle to make it!! Keep us posted on how you all are!

Hi! Congratulations on your pregnancy!! I can imagine that it is scary that your OBGYN wants to send you to a "high risk" Dr. but try not to let it worry you. Research shows that MOST patients with POTS and NCS actually feel better (in terms of their POTS/NCS symptoms) during pregnancy. Since blood pressure and heart rate can be so sporadic in people like us it is a good idea to have a more specialized Dr. Plus, remember, in today's times any condition you have that a "typical" OBGYN may not understand will make them want to refer you out for THEIR liability purposes. I wish you the best and keep us posted. We are here to support each other and there are several Mom's on this site with young children that I'm sure will be an invaluable support to you!!

Congratulations on your trophy for the beautiful roses you grow!!! I'm so happy for you that you are able to still enjoy something you love so much even though it takes more out of you now than in the past. It's great that your girls were so understanding and helpful as well. In regards to your being turned down by Mayo. I can only imagine your disappointment. I do know that Dr. Low is sometimes just completely bogged down. Personally, I didn't get much from him at all when I was there. Although he was nice I just wasn't given adequate time or a chance to ask any questions. Did you and your Dr specifically request the appt to be with Dr. Low? If so, I would recommend requesting to see anyone there who deals with autonomic issues, not just Dr. Low. That might give you better chance of getting in. I can relate to your frustration too about something new constantly coming up and having to always see Dr's and get tests etc. It does make you weary of it all sometimes. Our energy is so limited already as it is. I hope you will get some answers and that both your body and your spirit will feel much better soon.

Julie, I am so sorry you are in such a deep, dark place right now. Please know there are a lot of people on this site who care about you regardless of if your diagnosis is correct or not!! What matters right now is #1 you get through tonight, hour by hour if you have to. #2 Try to figure out what will help you feel better in this moment Can you email this Dr's office back and tell them you are confused by this last email in light of your last discussion with them and you would like either another emailing explaining more or a phone call? Is it possible his comments mean that the condition hasn't declined much from the last time he spoke with you? (Which is different than saying it doesn't exist) I don't know you so I don't know what's most helpful to you. Would you feel better/ or are you able to give yourself a break from thinking about this until tomorrow? Maybe you could have a "take care of ME night"...take a bath, paint your nails, listen to some comforting music, pick up a fun book to read...anything that feels rejuvenating to you. I know sometimes it's hard to get your mind off things but ask yourself what will make you feel better in the moment that will help get you through the night. We are here for you!! :