Poohbear

I have trouble eating pasta unless I also eat protein with it. I can eat Lasagne okay but if I eat fettacuine alfredo with no chicken I get a really bad tummy ache and feel awful (combination of lactose problem and pasta turns to sugar). I've been allergic to bananas for a long time now and in the past year I've become intolerant to most of the fruits I like (strawberries, apples, avocado, kiwi, grapes). Oranges are too acidic for me. Tomatoes sometimes give me problems too unless they are cooked (such as spaghetti sauce). I too love soups and have found this a good, nutritional option. I can make a large batch to eat on during the week or freeze part of it for days I can't cook but need a healthy meal. I have a really good recipie for a potatoe cheese soup that I love!!! (If anyone is interested they can email me (click on "Poohbear and send personal message) and I will give them the recipie). It's very simple and quick so that's a big help to me!! Other than that, I tend to snack on pudding, I avoid caffeine (except the small amount in an occasional candy bar), I avoid carbonated beverages to keep the IBS problems down. I too salt everything (maybe one of the few "Good" things about having this disorder )

What about making jewelry? I don't know what it's called...maybe glass beading?? but when I was young my Mom had these pieces of "fruit" (probably made of styrofoam or something similar to that) and you used straight pins to put a colored bead on the straight pin and then put the pin in the fruit. It was really very pretty. what about a making a mosaic picture or picture frame. You could probably do a small project that wouldn't be too messy to do in bed. I'll keep thinking but this is what popped into my head for now

Lisa, I hope your son starts to feel better soon and that resting more this week will give his body some much needed rest and a "boost". My advice is to follow your gut...you know your son and if he isn't improving keep pushing for answers and search for a Dr until you find one who will listen. In terms of the cardiologist....I understand what he is saying...that children have faster heart rates than adults (generally speaking) but that doesn't mean there is nothing wrong. It's good if his heart has a normal rythmn but it still may be too fast for him. This was the first and only symptom I had for many many years (aside from being very easily fatigued) and every Dr just shrugged it off until I started passing out. Especially in pediatric cases, I'm not sure those Dr's are as familiar with Dysautonomia and diagnosing it as compared to Dr's who treat adults and even they (as a group profession) are still not good at diagnosing. Go with you gut instinct and listen to your son and how he tells you he feels.

I too get this sometimes in varying severity and in various places. Sometimes I've been able to pinpoint it to migraine aura. (I'm one of the "backward" people that often gets very disabling migraine aura but many times I never get a headache). I've been told, in my case, this numbness and tingling could be a direct effect from migraine (which often the trigeminal nerve is involved) or it could be the POTS/NCS because those affect the blood vessels in your head as well (the vaso-dialation). Do you have pain or only the numbness and tingling? As Tearose mentioned the trigeminal neuralgia but my understanding of that is that there is usually severe pain with that. However, you trigeminal nerve could still be the root of the problem. Hope you get some answers and feel better soon.

Dayna, I know all of this stuff can be confusing and frustrating. I think I hear you saying that you don't necessarily FEEL these heart rate or bp changes but yet the neuro Dr does see these changes in you. It may be you have a correct diagnosis and your body isn't sensitive (by that I mean you don't notice it so much) to the heart rate and BP. Sounds like you are "in-tune" to other symptoms though. Everyone is different to what symptoms are most troubling. I've found it can be difficult getting Dr's to agree on what exact type of dysautonomia I have but it's clear to all of my Dr's that there is an autonomic dysfunction. When you say you've "failed" the autonomic testing are you saying that nothing has shown up positive? I don't know what testing you've had done but sometimes some of the tests they run are designed to diagnose PAF and MSA which are more "extreme" forms of Dysautonomia. So, just because some of the tests have been negative may only imply you don't have these more advanced forms of dysautonomia but you may still have some form. I hope I'm making sense! It's late and I'm getting brain fog!

I've been thinking about you today! We are here for you!!

Welcome to the world Alex!! Congratulations Mom, Dad and Ethan! I'm sure Ethan will be a wonderful big brother. Glad to hear you are doing well. Thanks for sharing the beautiful photos!!!!

Hi! My understanding is the heart rate and bp issues are the two main key factors in diagnosing NCS and POTS. I don't know of anyone with these disorders that doesn't have some type of problem with heart rate and BP (whether it's too fast or too slow). The symptoms you describe could be something other than NCS or POTS. You mention you have migraines and migraine could cause all the symptoms you described below. Have you had your Thyroid checked and/or you thyroid antibodies checked? That might be causing some of your symptoms as well.

Oh wouldn't it be great if we could be seen and effectively treated by just 1 or 2 Dr's?!!!!! That is the most helpful thing to me in going to the Mayo clinic; because it's a team approach and all the Dr's are reading each others notes and working together to find options for YOU that seem most helpful and least likely to cause problems and they explain in their notes why certain meds might not be good in your particular case and why....very helpful!!!! Anyway, for me: Cardiologist Neurologist Gynecologist Endocrinologist Opthamologist Psychologist (Mainly to have someone to vent to about all the inadequate and inappropriate medical treatment and someone, besides all of you, who is local who understands chronic illness and all that goes along with it)

April, I'm sorry to hear about your experience with the Neurologist!! It can be very difficult to find good Dr's. What part of the country are you in? Have you checked out the Physician List on this web site? Your symptoms sound similar to many with the exception that you started having trouble while pregnant. Most people feel better during pregnancy because their blood and fluid volumes literally double which resolves the hypovolemic issue many with dysautonomia face. I have heart rate and blood pressure problems that are all over the place (both too high and too low). The TTT does NOT provided a definitive diagnosis. There are many false positives and false negative; the ttt is a tool to help physicians make a diagnosis. Personally, I have had better success, more knowledge and understanding from cardiologists than neurologists in dealing with Dysautonomia. I have not been tolerant or helped by most medications to date. Have you tried other meds aside from the bblockers and anti-depressants...like Florinef, midodrine. Have you added extra salt to your diet to see if that helps (although if you bp is too high that might not be good for you). Keep searching for a Dr in your area that works with Dysautonomia.

Jan, You and Jeff are in my thoughts so much and I continue to pray for both of you and your families. Try not to beat yourself up about the housework and yardwork. I don't know how you or Jeff either one is but for myself sometimes I don't feel like doing housework and sometimes I do housework because it gets my mind off other things and gives me something to keep busy. Get as much rest as you can and please ask others for help and let them help you!! You and Jeff will get through this...just try to keep the lines of communication open between you and compromise with each other as much as you can; if both of you can do this it will help you both. My thoughts are with you!

I would NOT recommend the Mayo Clinic in Arizona for you since they do not have the ability to do autonomic testing at that facility; the other Mayo locations would be good though if you can get in.

I was recently told I have adrenal fatigue and my Dr recommended the book "Adrenal Fatigue--The 21st Century Stress Syndrome" written by Dr. James L. Wilson The book has helped me understand several things going wrong with my body (allergies, thyroid problems, fatigue etc). Anyhow you can check the book out and he also has a website if you want to look at that you may get some answers/insight from there as well. The website is www.adrenalfatigue.org

http://dinet.ipbhost.com/index.php?showtopic=2699 Check the above out. You can also do a search for more info.

http://www.dinet.org/Spring2005/spring05news3.htm

Emily, I can relate to what you are saying. It is good that we can hold hope, cherish each day and appreciate the things in life that we do have. At the same time, it is true that we have lost much in life and are limited in ways that our peers are not. Sometimes the anniversaries are difficult because it's a reminder or a "slap in the face" that we aren't better or reminds us of the things in our lives that we do miss. It's okay to feel sad and to cry over this!!! I personally don't have any "set" traditions for days like this; I kinda tend to do what my heart tells me I need. Sometimes I just need to write, sometimes I need to make a goal and start a plan to attain the goal, sometimes I need to hang out with friends and share my experience with them and sometimes I just need to order dinner to be delivered or take-out and then curl up with a good book or my favorite movie to help myself feel better. Whatever you decide to do, I hope you will feel better and know that your reaction is normal!

I see where you wrote that allergies have been eliminated. My understanding is that allergies are different from intolerances. I too have intolerance to most meds and increasingly to foods. I was recently made aware of the possible connection between mast cell activation syndrome and these intolerances. I haven't been able to find much research but it was an allergist and immune disease specialist at the Mayo Clinic in Jacksonville, FL that was most helpful in this area. You can also check out the last newsletter on this site, I believe it was under research where March 2005 Vanderbilt completed a small study showing some type of possible connection between mast cells and dysautonomia. Sorry can't be of much help but I do empathize with you!

I am glad you are improving some! The fatigue and sleep are big factors for me as well. One thing I read in a book about adrenal fatigue and sleep issues is that behavior modification plays a big role in our sleep cycle. The book talks about being in bed by 10-10:30. For people with insomnia due to adrenal fatigue issues (which most people with chronic illness have greater demand placed on the adrenal glands and when you think of Dysautonomia and the role of hormones and adrenal function it makes a lot of sense). The author talks about how if you are up past 11 you often get a second wind and then your body doesn't relax enough to fall asleep. It was really hard for me to get to bed by 10 every night but it has helped some. I find if I keep to a VERY STRICT routine and diet that my sleep is better. Good luck!

I don't really know what to say except to offer my support. I do know many of us do not tolerate any alcohol at all and even though you only had a little to drink that may have been the culprit of the last episode. Meds have not helped me either. I do think it's worth you trying the ssri's. Many people get relief and if one of your primary symptoms is adrenaline surges then the meds may really help. I often get autonomic storms several times a day; for me I just have to lay around a lot and tailor my life to doing a lot from home. I have empathy for you though. It's hard to adjust to this disorder sometimes. Hang in there!

Jan & Jeff, You are both in my thoughts and prayers! Words seem so inadequate at times like this but please know we care about you and your husband and will support you as best as we are able!! Hugs and prayers are being sent to you!

I can appreciate your concern regarding medications. Obviously, I'm no Dr. but if I was in your shoes I would ask what the Dr's expectation of each particular medication is in your sons case. Did they increase the Toprol because his heart rate and BP are still too high or because they just hope by increasing it will help him feel better? The florinef makes sense to me to try if he's never tried it before and it may help him. Personally, I would feel most uncomfortable with his being on Celexa and Wellbutrin at the same time. I would also report to the Dr that he seemed better on the Zoloft and ask about going back to that one. Bottom line, ask questions and if you don't feel comfortable with their answers or the results you see in your son and if you son says the meds aren't helping him then wean him off. I'm like you...I started out with some meds helping some but over the years I've become intolerant to almost all medication of any kind...OTC or prescription.

I am so sorry to hear of your news! I can imagine you are having a rollercoaster of feelings, thoughts and fears right now. You and your family will be in my thoughts and prayers!!!!!!

You will be in my thoughts and prayers, both tonight (that you can rest in peace and not be anxious) and tomorrow as you go through the procedure. I hope you get some answers and effective treatment as a result of the testing. Please let us know how it goes!! Hugs!!

How could I forget.... Chumbawamba (sp?) song I get knocked down...but I get up again...you're never gonna keep me down

How about Crash & Burn by Savage Garden Losing Grip by Avril Lavigne Don't take me down-Wilson Phillips Fallen-Sarah McLachlan