summer

Noreen: Prayers for you and your son going up from here too... wow, so much going on. I'm sorry that things are so hard right now. I hope you start getting some answers soon and that the news is good. Summer

Hi Dana, I posted this poll originally and was very interested in the results of that question. You are right that a diagnosis of dysautonomia does raise more questions, but for many of us who were dismissed by numerous doctors or diagnosed with ridiculous things like "sort of an unconscious anxiety" (yes, this is a "diagnosis" given to me by a Neurologist!! ), the diagnosis of dysautonomia finally validated all of the symptoms I had been experiencing for a very long time. It was such a huge relief! ...to be taken seriously. Not that there is anything wrong with being diagnosed with anxiety ...if that is the correct diagnosis ....but many of us knew that this was not the problem. So although the diagnosis of dysautonomia is not the total answer, I feel like we are at least finally on the right track instead of having our symptoms minimized or ignored. Summer

Hi Jana, I'm sorry you have been feeling so terrible, and your blood pressure certainly says it all. When I was diagnosed with OI/POTS, my doctor told me that it commonly occurs with CFS, and often patients will fit the criteria for both. I did, and he gave me both diagnosis. He told me that I probably had OI for years (since I was a teenager), but that at some point, a virus or something may have further weakened my ANS and tipped me over the edge into CFS symptoms as well. That is when I became really disabled, although I have always struggled with fatigue, etc, to some degree. It's hard to imagine you are able to do much of anything with a BP so low. I know that for me, coffee always brings my BP up about 10 mmhg. I know we have discussed it here on the forum a number of times, and some of us find it helps, others find it makes them feel worse. I'm not sure which group you fall into. So guess that would be my suggestion, and you probably already know whether you can tolerate it or not. Wish I had more ideas for you. hope you feel better soon.... Summer

Nancy, There are going to be many prayers going up for you from people on this board, including mine... Hope all goes well for you tomorrow, and that your surgery is successful in relieving your pain. We will be waiting to hear from you when you are able. Take care and God bless. Summer

Thanks for posting this. I can't get to the CFS article through the link, but I assume the conclusions are similar are they?

I wondered about that too. I did a search yesterday to see what I could find. I found an article talking about that that pointed out that there was not a lot of evidence that CFS was being passed on to spouses/partners. It also mentioned that if this virus is passed on through blood and body fluids, it could be passed from mother to child during childbirth or breast feeding. There is evidence that cfs occurs in families. I tried to find the article so I could post the link. Of course, I can't . If I find it I'll post it. Summer

Noreen, I'm glad you posted that. I have not really looked into the research that led to this decision yet, but I'm planning to. Canada definitely wants to err on the side of caution because of serious errors in the past involving contaminated blood products. So, perhaps this really isn't a good indicator that the link is strong between XMRV and CFS. They just don't want to take the chance of having another tainted blood scandle like they did in the 80's/90's. Thanks for pointing that out. Summer

Exactly, Julie! Infact, when I was younger, before ever being diagnosed with CFS or POTS, and not having obvious symptoms, I did give blood once, and it made me very ill for a couple of weeks. I fainted a number of times following and was extremely fatigued and nauseated. I never did it again because it made me so sick. I am not a person with a weak stomach so I knew that wasn't it. I understand now that I was probably hypovolemic to start with. I'm sure I would never have been diagnosed with CFS at the time, but I think I had the potential, and probably had POTS, although mildly. It will be interesting to see how this develops. Summer

I thought this was interesting and says to me that people are starting to take this illness seriously. I'm sure it's true that most people with CFS and/or dysautonomia are not well enough to donate anyway. The link between the illness and XMRV must be pretty strong for them to take this kind of measure. I thought some of you might be interested too. http://www.calgaryherald.com/health/Canada...5203/story.html

Hi Carinara, I wondered about this too and decided to have my fillings replaced in the hope that my symptoms might improve or go away. Unfortunately, it didn't change my symptoms at all. I'm still POTSy....Wish I had something different to share with you about it. Summer

Garrett, Some of the smartest people I know are Islanders All the best! Summer

Garrett: That's great that you were able to find a doctor close by who knew about POTS, and has been able to help. Was he a specialist? If so what type (neurologist maybe?). I'm impressed that someone in PEI knew about POTS and was able to diagnose you. I'm glad you find that your condition is fairly mild. Yes, increasing fluids and salt is key. I think also just having an understanding of what is going on in your body helps. The dysautonomia information network has a good dvd available that does a good job of explaining POTS and treatment options including lots of non-medication type treatments. It also lists lots of symptoms that are common in POTS - sometimes things you would not think were related. It is very good for helping families or doctors, or even newly diagnosed patients understand the condition. Take care! Summer

Hi Garrett, Sorry to hear you are dealing with all this at such a young age. I have lots of aches that go along with my POTS, but I feel them more as muscle aches. I do at times find that my skin can be very sensitive to pain as well. Chronic Fatigue Syndrome is often associated with POTS, and the symptoms are very similar. I was diagnosed in Montreal and was given both a diagnosis of POTS and CFS. My specialist there told me they often go together. I see you are from PEI. Do you have a doctor close to home who is able to diagnose and treat your POTS? There don't seem to be many doctors in Canada who are knowlegable about POTS or dysautonomia. I'm just wondering if there is anyone east of Montreal who treats POTS. Summer

Mirry - Wow! How great that you and your friend will have each other for support! Mirry and Reen - Another coincidence??? ....I also have a son with HFA/Asperger's! He is 14... I would love to chat sometime about that interesting part of our lives!! Summer

Reen, Sounds like an interesting article too! .....Go easy on the chocolate until that migraine lets up . Hope you're feeling better in time for the Easter Bunny. Summer

I found this article which clearly defines disorders related to syncope including POTS, OH, etc. I'm sure some of our doctors are involved in it's developement. It's long, but good to have bookmarked, I think. I have included the list of authors: http://eurheartj.oxfordjournals.org/conten...1.full.pdf+html Guidelines for the diagnosis and management of syncope (version 2009) The Task Force for the Diagnosis and Management of Syncope of the European Society of Cardiology (ESC) Developed in collaboration with, European Heart Rhythm Association (EHRA)1, Heart Failure Association (HFA)2 and and Heart Rhythm Society (HRS)3 Endorsed by the following societies, European Society of Emergency Medicine (EuSEM)4, European Federation of Internal Medicine (EFIM)5, European Union Geriatric Medicine Society (EUGMS)6, American Geriatrics Society (AGS), European Neurological Society (ENS)7, European Federation of Autonomic Societies (EFAS)8 and American Autonomic Society (AAS)9 Authors/Task Force Members, Angel Moya, (Chairperson) (Spain)*, Richard Sutton, (Co-Chairperson) (UK)*, Fabrizio Ammirati, (Italy), Jean-Jacques Blanc, (France), Michele Brignole1, (Italy), Johannes B. Dahm, (Germany), Jean-Claude Deharo, (France), Jacek Gajek, (Poland), Knut Gjesdal2, (Norway), Andrew Krahn3, (Canada), Martial Massin, (Belgium), Mauro Pepi, (Italy), Thomas Pezawas, (Austria), Ricardo Ruiz Granell, (Spain), Francois Sarasin4, (Switzerland), Andrea Ungar6, (Italy), J. Gert van Dijk7, (The Netherlands), Edmond P. Walma, (The Netherlands) and Wouter Wieling, (The Netherlands) *Corresponding authors: Angel Moya (Chairperson), Hospital Vall d'Hebron, P. Vall d'Hebron 119?129, 08035 Barcelona, Spain. Tel: +34 93 2746166, Fax: +34 93 2746002, Email: amoya@comb.cat Richard Sutton (UK) (Co-Chairperson), Imperial College, St Mary's Hospital, Praed Street, London W2 1NY, UK. Tel: +44 20 79351011, Fax: +44 20 79356718, Email: r.sutton@imperial.ac.uk External Contributors, Haruhiko Abe, (Japan), David G. Benditt, (USA), Wyatt W. Decker, (USA), Blair P. Grubb, (USA), Horacio Kaufmann9, (USA), Carlos Morillo, (Canada), Brian Olshansky, (USA), Steve W. Parry, (UK), Robert Sheldon, (Canada) and Win K. Shen, (USA) ESC Committee for Practice Guidelines (CPG), Alec Vahanian, (Chairperson) (France), Angelo Auricchio, (Switzerland), Jeroen Bax, (The Netherlands), Claudio Ceconi, (Italy), Veronica Dean, (France), Gerasimos Filippatos, (Greece), Christian Funck-Brentano, (France), Richard Hobbs, (UK), Peter Kearney, (Ireland), Theresa McDonagh, (UK), Keith McGregor, (France), Bogdan A. Popescu, (Romania), Zeljko Reiner, (Croatia), Udo Sechtem, (Germany), Per Anton Sirnes, (Norway), Michal Tendera, (Poland), Panos Vardas, (Greece) and Petr Widimsky, (Czech Republic) Document Reviewers, Angelo Auricchio, (CPG Review Coordinator) (Switzerland), Esmeray Acarturk, (Turkey), Felicita Andreotti, (Italy), Riccardo Asteggiano, (Italy), Urs Bauersfeld, (Switzerland), Abdelouahab Bellou4, (France), Athanase Benetos6, (France), Johan Brandt, (Sweden), Mina K. Chung3, (USA), Pietro Cortelli8, (Italy), Antoine Da Costa, (France), Fabrice Extramiana, (France), Jos? Ferro7, (Portugal), Bulent Gorenek, (Turkey), Antti Hedman, (Finland), Rafael Hirsch, (Israel), Gabriela Kaliska, (Slovak Republic), Rose Anne Kenny6, (Ireland), Keld Per Kjeldsen, (Denmark), Rachel Lampert3, (USA), Henning M?lgard, (Denmark), Rain Paju, (Estonia), Aras Puodziukynas, (Lithuania), Antonio Raviele, (Italy), Pilar Roman5, (Spain), Martin Scherer, (Germany), Ronald Schondorf9, (Canada), Rosa Sicari, (Italy), Peter Vanbrabant4, (Belgium), Christian Wolpert1, (Germany) and Jose Luis Zamorano, (Spain)

Rene, hope you are feeling better very soon. Sorry to hear you are dealing with all this. Sincerely, Summer

Jana, Bellamia, toddm, and lieze, Thank you all for your replies. Your encouragement really does help. You are so right, Jana, that the negativity only makes things worse. Generally, I am a positive person, but once in a while... it gets to me. I am usually optimistic that I am going to improve, and that's why I wonder if sometimes I am trying to convince myself that I have. Then, on days like this, it's like reality hits a bit and I realize that I'm not that much better. I'm coming up to my 3 year "POTS anniversary", and I guess I'm not where I hoped I would be. Bella, you are wise to point out how illness can bring positive changes in our lives, I know this is true for me too. Thanks for the prayer. I had heard part of it before, but never the whole thing. It really is lovely. Todd, there are good days and I believe there are more of them than there were 2 years ago. I am thankful for these. Lieze, It would be good to know how to answer people honestly when they genuninely ask how I am. I want to be truthful, but hate to seem like I'm complaining or or maybe seem like I don't want to feel better. On the other hand, you are right that it's not a good idea to say 'better'... and the next thing we know, we're really not. Summer

Does anyone else here ever feel guilty about not getting better? Sometimes I just feel like so many people have been so supportive to me, and tried so hard to help me get through this illness, but I don't seem to be doing the "getting through" part. My doctor has followed me and educated himself, and tried different treatments. My husband has done more at home, and shouldered the financial responsibilities alone. My parents and siblings have been understanding and tried not to expect too much of me at family occassions, etc. My employer has waited patiently for me, and has told me they will find a place for me when I can return. I really have a wonderful support system for which I am SO thankful. I just feel like I'm letting everyone down, because I'm not better. I have always been a person who was able to meet the expectations that people had for me, but I just can't seem to do it this time. Sometimes I even find myself telling people that I am doing better, when maybe over all, I'm not that much better. Maybe I'm trying to talk myself into it. Just wondering if anyone else ever feels like this. Summer

Hi Thankful, Yes, I guess we are in the same boat. I have been so blessed to have a supportive GP who believes me, and has done so much to help. I just feel like maybe I am expecting a lot of him to become a POTS expert. He has tried all the suggestions he has received, and has tried to contact the ANS doc for more suggestions as well. We have not heard back yet. These guys are so busy. I can relate to having difficulty figuring out how to fit back into a nursing career, where I don't really fit very well! I feel like if I were to be working with all the modifications that I really need, it wouldn't really be nursing anymore. And maybe that's my answer, something else. It's hard because I never wanted to do anything else - since I was a little girl. I worked as a nurse for 20 years, and it is difficult to imagine doing something else. Take care, Summer

I went through all this about a year ago. I had been away from work for almost 2 years and felt that I had improved but not sure if I had improved enough to work again. I was also feeling a lot of guilt about not working and not contributing financially to our family. I also decided "I won't know unless I try". So I did try. I arranged to have a modified schedule and modified duties and began working. I was not able to do it. I tried for 4 months and by the end of that, I knew that I really was not ready. I am not at all sorry that I tried even though I was not able to do it. At least then I knew I could not. I'm sure I will try again at some point, but I know now that just because I'm doing better at home, where I can totally control what I am doing, pace myself, put things off until I have more energy, etc. does not mean that I can handle the demands of my job where I can not do any of those things. You're right. You probably won't know until you try, and even if it turns out that you can't, at least you'll know! Good luck! Summer

Christy - I'm sorry that you and your son have not been able to find a supportive doctor close to home. It is so frutrating to be dismissed or or not be taken seriously even after being properly diagnosed by a specialist. I hope that with the help of your doctors in Cleveland that your son will have improvement, and be able to enjoy his life again. Credit to you for your hard work in finding him docs who can understand and help. momtogiuliana - I do have a wonderful GP who has followed my journey through this for the past 3 years and continued to refer me until we found a specialist who could diagnose me properly. Actually, I saw a number of specialists in my area prior to traveling so far, including a cardiologist, a neurologist, and an internist all of whom were no help (or worse). After a year of trying to find someone who knew about POTS/OI, I decided I would not waste my time hoping to find someone close by, and that I would go directly to a doc who specialized in ANS disorders who would do the TTT. He diagnosed me easily, saying it was not even a close call. He gave recommendations for my GP which we have followed. I have improved, but not enough to return to work. My GP is kind and supportive but admitts he does not know what else to try. I just don't want to travel all that way only for the ANS doc to tell me, there's nothing more we can do, and this is as good as it gets (which is a lot better than 2 years ago). The thought of making that trip again is sickening, but I doubt he will make any more recommendations after 2 years without reassessing me.

Many of us have had to travel long distances to be diagnosed by an ANS specialist and do not live close enough to have frequent follow-up appointments. For those of you who have had to travel for diagnosis, have you seen your specialist again? If so, how often are you scheduled for follow-up? Do you have routine rechecks (like anually or bianually), or would you only request to see them again if something came up that could not be handled by your pcp? Just curious as it has been 2 years since diagnosis and I have had no follow-up with the diagnosing dr. I live more than 800 miles away. I have had some improvement, but not enough. I'm wondering if I should make that long trip again.

Hi! Welcome to the forum. When I was scheduled for my TTT I was told to notify them if I had the flu or anything worse than a mild cold because this could effect the results of the test. I guess the best thing to do is give them a call and ask. Hope he is feeling better soon. Summer