briarrose

You can be symptom free and still have POTS. 30 BPM is just the magic number they came up with but people have be known to go higher and they are still POTS, I've been up to 160 recordered. It just sounds like she might not have the whole Dysautonomia package yet with her POTS, knock on wood that she doesn't get it

I would probably start with the dehydrated thought, drink fluids and possibly take in some extra salt if you are allowed. Caffeine can also help with my blood pressure but if you have unmanaged tachycardia I would steer clear. Try some support hose. Hopefully you can touch base with your doc. and he might have some more ideas.

The tilt table is going to be an important test for you, it will most likely be the determining factor on your diagnosis and treatment. Chronic fatigue does over lap Dysautonomia at least 1/3 of the time or more. A tilt table is probably going to be the difference of a CFS diagnosis and one of the different Dysautonomias. It's not pleasant to reproduce some of your worst symptoms but it is necessary and look at the bright side, you're in a controlled atmosphere When you're diagnosed properly they can attempt to treat you accurately. I had fatigue so badly (slept 21 hours once) that I was ready to give up my kids to my ex, quit my job and have my mom put me in a nursing home but I saw Dr. Grubb and he saved my life. Based on my diagnosis of POTS, Orthostatic Hypotension and Chronic fatigue he was able to work out a plan of medications for me. It took a little time and trial of different medications but I'm doing so much better now. I'm not cured but my symptoms are usually manageable and if they aren't I usually know what to do for relief.

Happy Thanksgiving everyone! I give thanks for having all of you here and the much needed support and valuable advice that you've given me over the years. I hope all of you are getting a good salt load this year and enjoy your day but don't overdo! Steph

Not sure of all the ins and outs of the military and the rules BUT 1. I would ask for another doctor's opinion and someone not associated with him. 2. Can you try to locate the last doctor that you saw, is she in the civilian world/practice now? 3. I wouldn't reapproach him he has an agenda and that is getting rid of you so he's not worth the time of day and it sounds like he probably doesn't want to learn anything new anyway. 4. Talk to someone here about your rights - http://www.usdoj.gov/crt/ada/adahom1.htm 5. Think about suing the military if they do anything extra to get rid of you and denying you treatment sounds like a good start 6. You might have to go outside of the military medical system for help and second opinions Stick with your guns (not literally ) You're better educated about Dysautonomia then that jerk, stand by what you know and what you believe and get ready for a fight Good luck and try to stay positive you have a lot of support here. Have a Happy Thanksgiving!

Royler Welcome to DINET Sorry still half asleep and jet legged so forgive me if any of this doesn't make sense. I'm sorry to hear about all of your troubles and for such a very long time too. I'm not a doctor and not aloud to give medical advice on this site but I can tell you what I think (one of the administrator's should put that automatically on the bottom of each post You didn't mention anything about your heartrate, do you have problems with that too? What kind of tests have you had done? Have you checked into CFIDS? http://www.cfids.org/about-cfids/symptoms.asp You live in NY, for your symptoms I would recommend Dr. David Bell. I only know him by his reputation and have never been to him personally. From what I've read, Dr. Bell worked with Dr. Streeten and Dr. Streeten was the turning point for figuring out Dysautonomia. I believe Dr. Bell is in Lyndon, NY and he specializes in CFS but you fit his kind of patient Let me warn you he is expense and I found it personally difficult to come up with the kind of money that they wanted when I was thinking of seeing him. Have you also checked this website under links for medical professionals? There might be more doctor's in your area too. I might add to this later when I'm a little more awake Have a Happy Thanksgiving!

I agree with Morgan as I live in Portland and have spent the last few years calling/searching around for a specialist. The hospital where I work even spent 2 weeks searching for me. I've called the U of W, neurology and cardiology depts. Same with OHSU, Providence and Legacy hospitals. I've searched high and low in Washington, Oregon, California, Arizona, Idaho, Nevada, etc. I give up and the best one can hopeful is for your doctor have an open mind and take instruction or advice from one of the specialists. Meaning that the docs here need to be open minded and learn some new things I fly to Toledo, Ohio to see Dr. Grubb.

I use Epogen and IV Iron, I'm much better than what I was. There have been a few previous posts about this subject, might want to search it as there were some good comments.

I have had problems with itching but found out that it was also associated with some of the different pill dyes. At the worst I took Benadryl & Hydroxyzine. I also changed some of my pills so they come only in plain white color. Much better now.

Welcome back Morgan! I'm glad to hear that those dang doctor's finally did something productive for you instead of giving you a bad time. You're finally in better hands Hope you told your old quacks a thing or two. I haven't been on much lately either, busy working, taking care of the kids and advocating for POTS patients in real life instead of online. That should tell you that I'm doing better most days, not to say that I don't have my daily symptoms but I guess I've learned to live with them mostly. Take care Steph

Always best to check with your doc but here are a few links for you http://www.umm.edu/ency/article/000721.htm http://www.webmd.com/content/article/66/79575.htm http://www.hmh.net/adam/encyclopedia/hhe%2...cles/000721.htm

What I know The Autonomic research doctor's say that there are over 1 million of us. The American Autonomic Society says that there are 1-3 million of us. So this is what I've been saying the last few years - I live on the West Coast where it is even less heard of then the Midwest or East coast. So does that mean that the doctor's have over inflated the numbers? If there are really 1-3 million of us was it an over night epidemic? Or the fact that this illness has been around and documented for over 100 years easily, was it just never paid attention to because it is so multi-system and God knows when that many symptoms aren't working it must be in your head (but now they are finding out literally in your head!) So this still isn?t being taught in medical school or during Residency and it?s not being talked about in the media yet. Even Chronic fatigue has been talked about for years yet it is said that at least 1/3 of chronic fatigue patients are actually POTS patients. So when I went to the NORD conference I discussed this exact subject with several people, doctors, patients, etc. What we need is publicity to share our stories with the rest of the Nation/World so others can be informed and know that if they are suffering the same symptoms there could be an answer for them too.

Mighty mouse has given you excellent information. You definitely need to figure out what chemicals he was working with because it might hold the answer of what you should be looking for. If his doctor's knew he was working around toxic chemicals, have they done (sorry can't think of the technical name of it right now) but basically it's a blood test specifically for people who work around toxic chemicals. The test panel includes looking at several different chemicals in the blood stream. You might want to try looking at an MSDS website here's 1 example http://www.westernlime.com/pdfs/MSDSMiracl...20toxicity' Different MSDS sites http://www.ilpi.com/msds/#Internet http://jrm.phys.ksu.edu/Safety/msds.html

Cindy I'm not a teacher but depending on what kind of symptoms you have there are probably tricks that can be recommended to you unless you are dealing with the fatigue too. Without knowing what kind of symptoms you are dealing with the only thing I can say is sitting on a high stool with a back might be beneficial so that you?re not standing for long periods in front of your class. Cindy Sorry just saw your other post stating your symptoms  Do you ever have increased heart rate? Or just drops in blood pressure? Are they treating your Myasthenia Gravis and Lupus? It sounds like managing your symptoms are going to be the best answer here. With little kids moving around under you and around you making your dizziness worse, I can?t think of a helpful hint to help you with that. I was going to suggest squatting but that?s really difficult to do in a class or hallway, you might scare the kids and you can?t see all of them. I?ll have to think more about your situation and hope that others chime in here, sorry. steph

Shy-Drager http://healthlink.mcw.edu/article/921961623.html http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm

Sorry it's taken so long to respond. Days I work I usually don't have the time or energy to post. Emily I didn't mean to take away from these great forums at all. Each illness group needs to be able to speak to one another about their individual symptoms, medications, docs, etc. What I meant was that we all need to have a better medical network in place, from diagnosing to treating. Your comment about many of us being on disability struck a note too. At the conference the doctor?s and some advocacy groups stood up and said you need to do more for yourself. Even though I had raised my hand to comment on that, they didn?t get to me. I wanted to say to that group that there are certain illnesses groups that can?t advocate for themselves like they need to, ours would be one of them. I?ll have you know that after the first day of conference I went back to my room and during napping sessions I wrote out 3 pages of things I wanted to say to the audience and doctor?s. Obviously I didn?t have the opportunity to say all of the things that I wanted but I did say a few important things, every little bit helps. I?m sorry I ruined your nap but I?m glad that I gave some people the opportunity to expand their thoughts on this. Gena It was so nice seeing your post; I really miss talking with you. Everyone has been so wonderful with the pats on the back, I feel bad about it. I wasn?t looking for any kudos, just wanted everyone to have the information. But the Kudos are a good feeling when I?m trying so hard to make a difference in whatever way I can. I?ve spent the last 6 months talking with some of our local politicians, seems like a brick wall so far but I?ll keep chiseling away. Take care and let?s talk soon please. Steph

Margaret You are partially right about Mayo but I'm saying it needs to be taken a step further. Mayo Clinic has seen and diagnosed a lot of Dysautonomia patients, Dr. Low's work is well known. But it has also been my understanding from reading stories here that after diagnosis at Mayo most of these patients haven't been allowed ongoing follow-up. It would be nice to have a place to go for diagnosis, research, ongoing treatment and further problem resolution; especially when you need a different specialist. It would be very beneficial if some these speciality doctor's start working hand in hand with each other to solve some problems. Everyone, thank you for your kind & appreciative comments. I wish I could do more, be a louder voice and make a faster difference in everyones lives. For those of you that wish you could do more but are too ill, just remember that I was like that for years and still have lapses. I've come a long ways and have at times almost given up, just hang in there and try to keep your head up, we're all in this together

Patricia I've thought a lot about this. I was making notes all the way home and have talked to a few people about some ideas. What do we all have in common? I think we all have a difficult time getting diagnosed, if at all. We have a difficult time getting treatment, medication; follow up care, research, knowledgeable doctors, etc. So instead of thinking about which group of diagnosed patients are going to get what piece of the pie, doesn?t make sense to put it all together and make it for everyone?? Wouldn?t it be great if there was a facility somewhere, centrally located in the U.S. that provided care for tough to diagnosis patients. A place where you could go that had specialists (Neurologist, Cardiologist, Gastrointestinal, Rheumatology, Endocrinology, etc.) that worked together for these tough patients with multi-system, multi-problem situations. A facility that diagnosed you treated you, did research and continued to take on your care. Now I realize that the travel would be a problem but one thing at a time. It would be so convenient if our doctor?s would work together and give us the best possible care and that would be best accomplished if they were putting their ideas together, instead of trying to figure it out singularly. I heard what mother talk about who son?s brain tumor (I forget the name of the illness) but it?s tumors that form anywhere from the brain to the coccyx and over time the treatments can cause blindness, endocrine problems, etc. Yet another multi-system illness. So instead of us each thinking about how we can use the money selfishly, we could probably accomplish great things putting all of the money together and treating everyone. OK, so now that I?m done with my rant, who?s going to call The Bill Gates Foundation and pitch the idea???

Sophia Thx The dateline in in the late 90's was on Chiari Syndrome and Dysauotomia. There hasn't ever been a show just on POTS any where. Hopefully we can change that someday, SOON I feel that it's extremely important to tell the public about this illness because there has got to be thousands of people out there that are struggling with symptoms and not getting any help, information, diagnosis, etc. It would be great if our information aired and if just 1 person turned on a light bulb and said that's me, WOW. Would even be better if some doctor's were watching and said, oh I have patients like that, hmmm maybe that's what's wrong with them. I feel for all of the people that are out there struggling, searching for answers.

Emily thank you for taking the time to write out such a nice note. I really, truly appreciate it. It was difficult going to Maryland. Plane travel always messes me up and it's an expense that I really can't afford because I'm still trying to raise my family and afford all of my medical. The conferences were very long (but I'm not complaining because it was all good information.) It was so cold in the room that it made my joints 10x worse. The first day I was there I had already pre-arranged a meeting with Senator Wyden's office to discuss funding for research into Dysautonomia. But midway through the day all I wanted to do was call and cancel because I wasn't sure that I could physically stay awake and make it to his office. I had to MAKE myself just do it, even though I wanted to sleep so badly. The second day I was there I probably left a good 20 mins before it was over because I was so exhausted all I could do was make it up to my room to crawl into bed to get warm and die. It was a huge disappointment because it was a Saturday night and I really wanted to go into DC and see some things. Sunday was a half day and it was even colder in the room so I had to occasionally stand up and pace around. The cold absolutely added to my exhaustion and would just suck the life out of me faster than it already goes. I keep this in my mind though - When I was at my sickest with POTS and all I could do was lay in bed sleeping or staring at the walls; I kept swearing that if I ever got any energy back that I would devote it to being a speaker of this dang illness. I'm trying to stand by that and do what I can as an individual. I?m grateful for my all of the doctor?s that have supported me, stuck by me and helped to find medications to improve my quality of life. Dr. Grubb was the number 1 guy for me and my doctor?s here in Oregon for following through with his care plan. It frustrated me talking to people at this conference and they thought POTS was pretty simplistic with minimal symptoms. Why this illness hasn?t had more attention just blows my mind. Someone please explain it to me! If astronauts suffer from these symptoms after space travel and you can develop this illness from so many factors then how is it that the public doesn?t know about it. If there are really 2-3 million of us now, why isn?t this a common topic like MS, Parkinson?s, Lyme, etc? It's kind of sad because as I was sitting in the conference, listening to so many different groups of people with rare illnesses; I kept thinking to myself if all 25 Million people with rare diseases stood together, what an awesome voice that would be. It would be nice to unite so many people to get something accomplished. Thanks again for supporting me!

Well I had planned on writing this last week but have been playing catch up. September 28th thru October 1st I was in Bethesda, Maryland for the National Organization for Rare Diseases (NORD) conference. The conference was well done with so many great guest speakers from the National Institute of Health, FDA, Genetic companies, etc. There was a mock Institutional review board (IRB.) They had doctor's come in and explain where they are going in research. The FDA and a pharmaceutical co talked about what it takes to produce a drug vs. an orphan drug. The NIH has a department known as The NIH Road map and Translational Research; this is the department that helps with research for rare diseases. http://nihroadmap.nih.gov/ OPASI - http://opasi.nih.gov/ The FDA has a department called the Critical Path Initiative; this is the dept that helps with Orphan drugs http://www.fda.gov/oc/initiatives/criticalpath/ Over 250 people were registered to attend this conference, doctor's, patients, different illness groups. There was a gentleman in the audience who was representing himself with Multiple System Atrophy. He made the comment that he felt like he was dying and it broke my heart when the next audience speaker stood up to tell her story and made a joke out of "we all feel like we're dying but that's not the case? Well I guess she didn't realize that MSA is Shy Drager and usually has the "7 year death sentence." I spoke about Dysautonomia publicly and individually with many people and some doctor's. Most people I spoke with knew the term Familial Dysautonomia but was surprised to hear the term Dysautonomia standing by itself. One woman from an illness group minimized POTS as being a single symptom problem. I personally find it amazing that there is suppose to be more than a million of us but yet I still have to explain Dysautonomia to everyone I meet, including my own doctor?s. The public isn?t familiar with the term. The American Autonomic Society says that there are 2-3 million of us now. Well if there are truly that many of us why haven?t we had any publicity yet and why isn?t Dysautonomia as common a word as Parkinson?s (inflicting 500,000 to 1.5 million in the US?) Or Multiple Sclerosis inflicting (400,000 people in the US?) For all of you guys that have ever been completely frustrated by your own doctor?s The last day of the conference I made a statement to the audience about rare illness, including Dysautonomia. It was a 3 part statement but the last part I would like to share with you guys because it seemed pretty powerful and had a very positive response from the audience. I said, ?there are thousands of people out there that struggle getting there symptoms treated and taken seriously by doctor?s, when the doc is fed up or doesn?t know what to do with a problem patient he immediately diagnoses them with Stress, Anxiety, Depression and sends them to see a shrink. The shrink sees the patient and determines that the patient needs to go back to the doctor and have their real medical problem treated. To this I say IF the rare illness community is really Depressed, Stressed or suffering from Anxiety; it isn?t just the illness that is causing this problem BUT it?s the doctor not listening to them and it?s not the rare illness patients that needs mental health evaluation but rather the Doctor?s themselves need a good shink! All the patients in the audience clapped and yelled when I said this very true statement. On that note I have to say that personally I?ve been fortunate and have only been told by one doctor that I need a support group or chronic illness counseling, he was fed up with me. As angry as it made me at the time, I realized that instead of the doctor admitting his fallacies or short comings it was easier to pass me off rather than truly deal with my neurological issue. This kind of problem needs to be addressed around the world and the doctor?s need to be held responsible for mismanagement of multiple or difficult symptom patients. I would hope that people like Laura Hillenbrand would agree with me. Laura?s story - http://www.cfids-cab.org/MESA/Hillenbrand.html Or A mother who refused to give up on her daughter http://dinet.ipbhost.com/index.php?showtop...6&hl=mother Well this was a great conference I was overwhelmed with information. I know that the NORD is going to be posting all of the papers/information packets from speakers on their website in the coming days if anyone is interested. http://www.rarediseases.org/

Did anyone see last week's episode where the teenage son was the suspect but when he fainted at the site of blood Grisom said something about proving that he wasn't faking by giving the kid a tilt table test. The kid had an increase in heart rate and then passed out.

I spoke with Dr. Harkin on the phone. He said that he was aware of human cases in fact he has a friend that has Dysautonomia. (sorry I wrote it down but left it at work) They have found that animals that have Dysautonomia have some sort of lesions as the cause.

Nina You gave me a good laugh, thx. I will try to repost those links for those of you that can't open them. steph OH and I left Dr. Harkin a voice mail this morning to tell him to check out this website! steph

I'm beginning to think that the veterinarians will figure this out before the MD's. Has anyone ever checked out the similarities? http://www.newss.ksu.edu/WEB/News/NewsRele...omia102804.html It has no human equivalent, wonder what they meant by that? http://www.cvm.missouri.edu/neurology/Dysauton/FAQ.htm#what http://www.medscape.com/medline/abstract/12418523 http://www.medscape.com/medline/abstract/11330614