lumpchp Posted October 3, 2012 Report Share Posted October 3, 2012 Hi, new to forum and new to the whole dysautonomia situation. I have known that something wasn't quite right since the birth if my son a year ago. I used to be a very active, outgoing woman. As I'm sure you all know, that is not the case now. So far, all I am sure of, is that I can no longer even so much add stand without feeling like I could pass out at any second. I have not been through any "formal" testing for dysautonomia, but after almost weekly trips to er for what I feared was a major heart problem, an amazing neurologist examined me and concluded that my autonomic nervous system was failing. I now require a "babysitter" for myself and my children, for I am terified of being alone with them, my 7 year old has seen mommy fall down unconscious one time too many. through ll this, my husband has tried to be supportive, although he seems to think that I am just tired, and that maybe I just need some rest. He is in the military, and gone about 2 weeks a month. What can I do or say to help him understand? I have this feeling that he sees me as a weak and uncapable wife, something that I have never been during our 10 years of marriage. I am fearful of becoming depressed, any thoughts??? Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted October 3, 2012 Report Share Posted October 3, 2012 I'm sorry! I don't know what to say... I'm glad you found dinet! My husband is military also,something about their strong attitudes makes me feel silly sometimes. My husband thinks its all anxiety, and that I can get over it. Do you use Tricare? It's such a hard insurance for me right now... I would love to commiserate Quote Link to comment Share on other sites More sharing options...
leydengs Posted October 3, 2012 Report Share Posted October 3, 2012 That's a tough one, it's very difficult for someone else to understand what you're going through. Check out some of the links at the top and there is a great video that explains POTS, he could watch that. My bf watched it and he was amazed (even though he's done research on it and asked me tons of questions about it). Could he go with you to a doctor appt (maybe that neurologist) and have them explain to him exactly what is going on with you. He could read some of the stories on this site from people who are suffering from POTS to see just how much this affects your life. You are far from weak and incapable, what you have is something that you have absolutely no control over!!! If he's willing to learn about what's going on with you I'd start with the video, it's like 43 minutes or something like that. This isn't something that is going to go away tomorrow and even with meds it can get better some days. One thing that I learned was that if I'm tired and worn out I absolutely have to rest or my symptoms become much worse. Increasing my salt has helped a lot, switching to gluten free and eating smaller meals (6-8 meals a day with little carbs) has really helped me as well. Trying to get out and walk, if you are able, helps my muscle and joint pain. Good luck and don't get depressed!! There is so much support on this site and take care of you. He will either be supportive or he won't that still doesn't change the fact that you have this disorder so you have to do what is best for you Good luck, my guess is he'll come around once he learns more about it, it's difficult for a person to wrap their brain around what's going on. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted October 3, 2012 Report Share Posted October 3, 2012 He will come around...Meanwhile get a diagnosis; that helps, and once you are receiving treatment, it will help with a lot of the issues you are dealing with. I know it seems overwhelming right now, but trust me, it will get better. I like leygengs idea of your husband going with you to the doctor, so that he listens to the results of your testing, too. I couldn't drive, so my husband had to come!! Too dizzy, and had problems with vertigo, initially. Have him watch this amazing video, and he will start to understand...Changes; Living with Postural Orthostatic Tachycardia Syndrome. For some reason it is not showing up, so just look it up on you tube. It is 45 minutes long but it is worth every minute!! Quote Link to comment Share on other sites More sharing options...
comfortzone Posted October 3, 2012 Report Share Posted October 3, 2012 Hello and hugs too as I feel bad for what you are trying to cope with essentially on your own! I'm grateful that you had a neurologist pick up on your health problem/diagnosis ~ but it would seem you could still use some medical care to help with your symptoms - diagnosis is good - but helping you deal with the fall out is now an essential part to feeling better....The people here that post have a brilliance not seen in many groups - in offering tips for coping with the frightening or even bizarre kinds of symptoms we have when our ANS goes wonky - but still someone willing to trial you on meds - and do formal testing would be ideal. Does the army insurance pay for MAYO clinic? If someone could watch the kids and you could get to Phoenix/Scottsdale AZ - Dr. Goodman could do the ANS testing, then prescribe meds to help balance and support your system so you feel better - even so - with excellent neurologists - it can be a trial and error waiting game to hit the right combo of meds to help you feel and function better. A diagnosis of a failing ANS sounds like serious business because it is - and to start off on the right foot would be super.... If that is not a possibility - then somehow you would have to brainstorm on how to get to a neurologist who treats this kind of thing - OR you can watch videos etc and bring suggestions to your local neurologist to see if he is willing to try things out on you.If you want to listen or learn about orthostatic intolerance from Dr. Goodman on the web - you can go to Mayo Clinic - then click on the top banner that relates to "For Medical Professionals" - then go to Grand Rounds - and then scroll till you find a video he presents on this topic - click it and you can learn what he taught the local Mayo here as the basics of what it's about and treatment. Sometimes learning has you feel more powerful and strong - and better able to cope. I don't know if you have POTS or pure autonomic failure or just what is going on - but the more you learn - the better able you will be to communicate with family friends doctors work people etc....My PT I recently hooked up with to work with issues probably EDS related is an airforce guy and doesn't have that 'tough' outlook or manner ~ after you go through all those years in serving our country - seems the heart of service does come to the surface - and for him it was him getting a PT degree (on top of 2 others!) - and he's done PT with kids and every age population - such a genuinely caring person. So in him I saw what probably was an 'over a period of time' blossoming of that inner core that truly wants to serve others - our country or patients.... For him perhaps education and having to do all the 'underling' types of things a student has to do - when being used to being the top dog - brought it all together. Maybe it will be the same for your spouse - the more he learns with you about this - the better he will feel equipped to deal with it. First he has to believe it - the seriousness of a failing ANS system - but that coupled with tons of hope - as sometimes our problems will self resolve. The patients whose symptoms have gone away and healed probably don't post much here anymore - but there are many people who do improve at least if not healed - become near symptom free - with the help of skilled doctors and trial and error...Go easy on yourself too - you did nothing to bring this on.... 'blank' happens! You may have the emotions of frustration, anger, sadness ~ that's so normal - but then what to do with them is the next step in victory.... I was recently reading the Mayo clinics Guide to Pain Relief - and essentially it's about Chronic 'pain' patients who want to live a full life with minimal to no medications for pain such as opiates. But you could think of it as a book about 'chronic' stuff in general because the topics address exercise, eating right, mental thought patterns, family dynamics, scheduling your days etc... when all of it feels impossible or overwhelming - So maybe you library has it - or you can order it on Amazon if the budget allows - it actually may not be in the libraries just yet even though it's a 2008 book. I'm going to try some of the techniques in it to help me with extreme fatigue and pain - my orthostatic intolerance is doing a bit better these days....Blessings on your path - keep joyful as you can and count your many blessings - we all have them - in spite of the challenges! Quote Link to comment Share on other sites More sharing options...
lumpchp Posted October 3, 2012 Author Report Share Posted October 3, 2012 Thanks for suggesting the video, I will deffinately have him watch. As for a diagnosis, I went to my gp yesterday, and she said that a gp couldn't diagnose? So now I have to wait for a referral to neuro and cardiology, which with tricare could take a while. So that could be up to 6 weeks, and that means no help with symptoms. Maybe I should post about what I can do to ease symptoms without meds, I don't think I can function like this for that long... Quote Link to comment Share on other sites More sharing options...
leydengs Posted October 3, 2012 Report Share Posted October 3, 2012 Good luck with the the new doctors and I hope they are finding ones that specialize in POTS. There is a link on dinet.org for doctors who specialize in POTS and where they are located. Do you have to be referred to them or could you call yourself and set the appt? This is the place to get some ideas to help with your symptoms but just remember that if it works for some people it might make you feel worse. For example drinking cold water and more than a couple glasses makes me feel HORRIBLE while others don't experience that. The best thing for me is increasing my salt. I carry a salt shaker with me when I'm working out and hwen I start to feel dizzy I pour some in my hand and take that and it seems to work really good for me. Good luck and I hope people can give you some tips to help you!! Keep us posted Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted October 3, 2012 Report Share Posted October 3, 2012 See the blog at www.potsrecovery.com Quote Link to comment Share on other sites More sharing options...
Elenapap11 Posted October 3, 2012 Report Share Posted October 3, 2012 As everybody else already mentioned you are in a forum where people can help you in many ways.And most of all emotionally.We've all been there-the questioning by family members and relatives,the guilts that we are not good wives,partners,mothers,daughters etc.Most of all the feeling that noone understands you and ocassionally make you feel like you are making it all up.Especially doctors are keen to give you a panic attacks/depression diagnosis.You need to be mentally and emotionally strong because i remember that before i was diagnosed i was so tired by all this that i always ended up crying in the doctor's office.Then i realised that i have to keep calm and not to expect others to understand but MAKE THEM understand that i was not going mad.A good nutrition,avoiding stressfull situations and a good many hours of sleep are a prerequisite to control Dysautonomia episodes.The first year that i had no diagnosis i felt better with a foot massage.I also found comfort in reading prayers and listening to instrumental music. Since the whole situation started after your son's birth maybe you should check your hormones.Hormonal imbalances can lead to autonomous nervous system failure.But there are hundreds of things that could have triggered yours.I hope you find answers soon.Good luck and a big supportive hug. Quote Link to comment Share on other sites More sharing options...
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