danish

Hi. I originally took .6 mg a day of florinef but it gave me really bad headaches, so now I'm down to .4 mgs a day. ~Sarina

Hi, I am 15 and I have seizures caused by POTS. They are called anoxic seizures, or convulsive syncope. Basically, when I faint sometimes so little oxygen is getting to my brain that I begin to convulse. However, I also get tremors, which sound a lot like what your son has. These tend to happen when I'm not doing well, or sometimes after I've been sitting too long. I'm on a whole combination of meds and am doing a lot better right now, but still faint a fair amount. Anyway, good luck with your son! ~Sarina

Hi Danelle, I'm very sorry to hear about your son's dx. I'm almost 16, so I can attest to how difficult it is to have POTS during high school. I do think that having an early diagnosis, and a mom who can empathize will make things much easier for him. I do want to suggest that your son join DYNA (http://www.dynakids.org/). It's helped me out so much to talk to other people my age going through the same thing. Anyway, hang in there! I'll be thinking about you. ~Sarina

Hi, I have to say that I very much disagree with the theory that anxiety or stressors cause POTS. I have never had problems with anxiety or panic attacks, and know that this is true of many other POTS patients. For a long time I was labelled as having an eating disorder and passing out for attention, but at least for me, I know that I'm not in control of my symptoms. I've never heard of panic attacks causing nerve damage, but like you, I'm not a doctor. I do understand why having POTS could cause someone to be paranoid or depressed. After having quite a few seizures in the shower, I was scared and paranoid to have them, and I do get down by not being able to be in school or do things with my friends. However, I think that all of that is situational, and a natural human response to specific situations. The ANS controls many functions of the body, and like other people here, lots of things have been affected. I respect other peoples opinions on this matter, but I feel strongly that we do not bring POTS/ autonomic dysfunction on ourselves. ~Sarina

I'm glad that Emily is doing better! I don't know her well, but I remember how sweet she is. I sent her a card in hopes it'll cheer her up a little.... Anyway, I really hope that Emily continues to recover, and I know that she is really missed. GOOD LUCK EMILY!!!

Thanks everyone so much! I have the test scheduled for a week from Tuesday, and feel much better knowing that it's not unbearable. I'll let you guys know if they find anything. I agree! I'm almost 16 and perfectly capable of articulating how I feel, but my neurologist insists on one of my parents coming into all appts, and talks directly to them. I asked him on the phone, but he just wouldn't say why he wanted the test...oh well.

Hi, I also have had an overall thinning of my hair, but I used to have very thick, unmanageable, hair so it actually hasn't bothered me too much. My dysautonomia doctor said that the hair loss was due to decreased blood getting to my hair follicles. It wasn't horrible, just a slight thinning, and pretty much went away once I started treatment. Good luck! Sarina

Hi! I hope everyone is doing well. My neurologist just told me yesterday that I need to get an EMG, but refuses to tell me why. I looked online and saw that it is used to diagnose about a billion things, and since I've seen the word float around the forum quite a bit, I was wondering the reasons that you guys have had them. My neuro claims that it's painless, but he hasn't always been completely truthful about such things, so any tips/advice would be really appreciated. Thanks so much! Sarina

Hi Lynna, I'm sorry that your son has to go through all this and I know that it's really hard. I was also accused of my illness not being physiological, but instead of anxiety, they thought I had an eating disorder, even after I was diagnosed. Apparently I had all the "tell-tale signs"; namely fainting, weakness, dizziness, digestive problems, hypersensitivity to temperature changes, fatigue, lowered resistance to illness, headaches, low blood pressure, palor, poor circulation, bags under my eyes, and of course "denial". Anyway, it's very important that you keep fighting for your son. I don't think it would hurt to see a psych, but if you don't think your son's symptoms are caused by anxiety, make sure you prove it. I do get a sudden onset of symptoms when I stand up; usually I black out (or occasionally faint), but sometimes it's just like what you described your son having. I get the worst after I have been standing for a period of time, but whether one's reaction is delayed or not varies from person to person. I also get the "spots" all the time, and have found that they are fairly common with dysautonomia patients. I do think that having a TTT would help -- I was also diagnosed without one, but it helped to pinpoint all of the bp/hr specifics. The last thing I want to suggest is that your son join DYNA (the Dysautonomia Youth Network of America). They have a forum, similar to this one, except that it is for kids and teenagers. I know that talking to people my age who can relate has helped me a lot, so I would definitely ask him if he's interested. Good luck! Sarina

Julie, I have asthma so I need to have a PFT every couple months, and I also have a couple different peak flow meters and spirometry devices to check myself at home. All that it really entails is taking a deep breath in and blowing out as hard as you can into a tube while you have a nose plug on. It's feels a lot like your'e blowing up a balloon. Some of the computers show you the graph itself, and others have images to help you like blowing out candles on a birthday cake. The test is about ten "blows" but because of all the pots stuff I get really dizzy after one or two. Once last year the nurse didn't listen to me and I ended up passing out. You really don't to blow that many times to get accurate results, so if you feel sick make sure that they let you stop. If you don't use inhalers now, you probably won't need to use any unless the first go around is abnormal. Then they would probably give you something like albuterol or intal and see if you do better a second time. Overall, it's painless. Good luck! ~Sarina P.S. Amy, they always give me either an oxygen mask or nasal prongs at the hosp. when I have an asthma attack. I think that it's the combination of the O2, steroids, inhalers/nebulizers, and w/e the breathing medicine in the IV is that does the trick. I have no idea if oxygen itself would help. When I had whooping cough I was on oxygen but that was just one big mess. BTW, I don't think that struggling for air neccesarily means that you have a low pulse ox. During the whole whooping cough fiasco my blood oxygen would sometimes go down to 85% and I would be breathing fine at that moment. So I'm assuming that the opposite is prbably true for you.

Tearose, Like I said before, I?m not a scholar or anything. I?m sure if you look online you can find a lot of information on all of this, but this is what I remember in the midst of brainfog. I?ll answer what you asked/said in order, but I do think that you?ve been misinformed about a couple things. By the way, sorry that this is SO incredibly off topic from POTS. 1. In Orthodox Judaism, Halachah (basically all of the laws in the Talmud) is taken very seriously. In Orthodoxy, the commandment of ?lo tasif vi lo tizroah? (do not add or subtract) is strictly followed, meaning no halachah can be added or taken away. So no, no oral law can be added. However, the beit deinim (religious courts) still make decrees, rulings, and customs which are considered authoritative. In addition, Orthodox Judaism makes no attempt to interpret or understand any mitzvot or halachah, as they carry out the verse in Genesis, ?na?aseh vi nishmah? (doing then understanding), so Orthodox study is limited to the practice. 2. Conservative Judaism is pretty much parallel to Orthodoxy as far as adding or subtracting halachah, or oral law, and live their daily lives ?k?fi halachah? (according to halachah) like Orthodox Jews. So, no, Conservative Jews actually don?t add on to oral law. However, asking questions is at the core of Conservative Judaism. Getting their inspiration from the verse in Psalms, ?hevee?ani? (give me understanding) they believe that it is important to understand why you are following the laws. Basically, Conservative Jews are at the opposite of end of the spectrum from Orthodoxy as far as finding reasoning, as they carry out the verse in Deuteronomy, ?vi?yasmanu atah vi na?aseh? (and you will understand and then you will do). 3. The reason that Conservative Judaism allows women to be rabbis is not because they have changed or added oral law, but simply because they understand it differently. The reasoning behind their thinking is really confusing but I?m about to send you a PM with a basic explanation. Obviously, anyone else can read it if they want to but this post is already very long. 4. Most Reform Jews completely disregard Halacha, although a few follow it to the minimum. Also, reform Judaism only requires the abiding of the ethical mitzvot (don?t gossip, visit the sick, etc.) or ones that add to their secular life (although most observe other customs as well). Reform Jews consider themselves ?first nationals, and then Jews?, and will allow their members to do anything to ?fit in? with the outside community. Reform Judaism has written their own rules and regulations in place of Halacha, but technically they aren?t ?adding? Halacha (oral law), just doing away with it. I just realized how long this all is. So SORRY!! Ha my 6th grade teacher would be proud. ~Sarina

I really, really hope that Dr. Grubb begins to recover. He isn't my doctor, but I know how much he's done for dysautonomia. Just a suggestion....do you think that it would be possible to get him some kind of gift/donation in his name, through an online effort? He's done so much for so many people here. I don't even know if this is possible, and haven't thought out any of the logistics, but I was thinking that maybe it could be done jointly through different websites (dinet, ndrf, dyna....). Maybe it wouldn't work, but I just think that he'd deserve it. ~Sarina

MORGAN!!!! Happy Birthday!!!! I hope that you had a really great day!! Did you do anything special? Thanks so much for everything you've done; when I asked a question about a diagnosis you were so great at explaining it and making me feel better. Whenever I post on dyna I feel like I have lots of caring siblings, and whenever I post on dinet I feel like you all are caring aunts and uncles. So thank you!!! I hope you have a really great and healthy as possible year! Lots of love, Sarina

WELCOME BACK!!! You're so lucky!! It looks like you had an amazing trip, and I'm so glad that you felt ok. Now the only question is where to vacation next? Happy New Years!!! ~Sarina

Hi everyone. Tearose, the Talmud is the oral tradition. It's made up of the Mishnah (which is commentary on the Torah), and the Gemara (which is commentary on the Mishnah). Like I said before, the Talmud is our sole record of what Hillel said and did, and this quote isn't anywhere in the Talmud. My friend's father asked a couple Jewish scholars of this era, and both of them confirmed what he originally thought. He gave me a pretty definitive answer, but if anyone feels like doing more research, why not? Obviously, I'm no expert on Jewish history, or rabbinics (although you do pick up quite a lot after 11 years of going to a Jewish school.... ), but I do trust his knowledge. ~Sarina

Briarrose, Anything that Hillel, Shammai, and Yochanan Ben Zakkai all said were recorded in the talmud, most of them in Pikei Avot, but many in Ketubot, and Eruvin too. Obviously, Hillel said more things in his life, but considering that he lived in the 1st century BCE, it's extremely unlikely that any quotes have been passed down by word of mouth. In addition, he lived during the time of Herod which was a very oppresive time for Jews, so any other records of what he said were destroyed by the Romans who were occupying Palestine. We do have hundreds of quotes of things Hillel said, most of them from when he was nasi (president) of the Sanhedrein (the Jewish supreme court), but this isn't one of them. Hillel has been wrongly attributed to quite a few things, so this anything new. Like I said before, it isn't a big deal and obviously a GREAT quote. My four best friends all have bracelets and I can't wait for school to start and other people to see them! ~Sarina

Hi everybody! I just got my dinet bracelets at the end of last week, and am so excited to have them! Right away I gave one to one of my best friends, who really liked it. Her dad, who is a rabbi, noticed it right away when he came to pick her up (see I gained pots awareness within only hours of having the bracelets! ). He did mention, however, that he had never heard the quote before. He did some research and made a few phone calls, and found out that Hillel never actually said that. Obviously, it's an innocent mistake, and as he pointed out, a really great quote nonetheless. However, he suggested that if there is a second print up of bracelets you write "unknown" instead of Hillel. I wasn't sure who's in charge of this type of thing so I just thought I'd post it. Anyway, the bracelets really are great! ~Sarina

I have a question for you guys. I can do all of these things that you guys are talking about-- splits, bending my thumbs back to my wrists, bending my pinkies back, touching my hands flat on the floor w/ straight legs... Isn't it possible to just be flexible? I used to iceskate pretty seriously and also dance, so I just always assumed I was very flexible, plus I'm young. I've never dislocated anything, so does that mean that I probably don't have Ehlers-Danlos? Or should I bring it up with my doctor? Thanks, Sarina

Mary, I think you are very right that Billie shouldn't be penalized for being sick. I missed over 3 months of 8th grade and it was really difficult to teach myself everything and keep up. It would have been so much easier with tutors at home! However, at least in my school, IEP's are very complicated because they're done through special ed. People have to keep being reevaluated and things tend to be much slower. Most children (at least here!) with chronic illness tend to have a 504 plan. This is done through the disibilaties act, and in our experience is much easier. I'm in 10th grade now and unfortunately, right now I have to be homebound because the fatigue was overwhelming and I couldn't make it through the the day without fainting/having a seizure. I hope to go partially back soon, but because of the 504, getting tutors at home has been very easy. Also, IEP's here tend to not be very flexible (it's either all or nothing, and you can't change from day to day), so that's another advantage of the 504. Whichever route you go, this is definitely something I think you should pursue. Our good friend is the head of admissions at Yale, and he has told us that there are no ramification from getting a 504, at least not in terms of college. Good luck! Sarina

Dr. Grubb, Hi! My name is Sarina and I'm 15, and from Philadelphia. Even though we haven't met I just want to thank you for everything that you're doing in the dysautonomia field and for dyna. My doctors talk about you as "world reknown", and I may have not been diagnosed if my doctors hadn't read all the stuff you wrote. Also, last week my friend gave me Chicken Soup for the Jewish Soul to cheer me up. Your story was one of the first that I read, and it was such a coincidence because I'd been hearing so much about you (and I had just watched Judgement at Nuremberg on tv the night before!). Anyway, I just wanted to tell you that it was a really touching story. Thanks again, Sarina

Its says in her profile that she was on yesterday, so at least she's still out there. I guess my best guess would be that she is just too worn out to post now. Anyway, if you're reading this, purplefocus, I hope you're feeling better! ~Sarina

I just reread my post from last night. In case you misunderstood I wasn't trying to pressure you to post more or when you can't. I just wanted to say that what you've already said has meant a lot. Sarina

Emily, Thanks for your post. When I first posted you (and everyone else) were so welcoming. I'd been feeling very alone about this, so I really appreciated that all of you were so sweet to me. From what I've read, everything you write is not only informative but reassuring too. I'm in the process of joining dyna kids, but for now this is all I have in terms of support. You deserve some time for yourself; you've done so much for people here. But SERIOUSLY, I don't know if you realize how much one post, just a few lines of encouraging words, can mean to someone. I hope that you stop feeling so alone and that you (and your cat) have a good night. From a fellow Pennsylvanian, Sarina

Sue, My cardiologist also suggested a saline solution for me, and said I should decide by my next appt. (next week). He told me that it gives almost conplete relief for about 48 hours and most people are free from fatigue and rarely pass out. He did say, that the effect wears off and then you're back to square one. He told me I could have saline IV at home for a couple days, but that I should know it often is very emotionally upsetting (to be able to live normally, and then start being sick again). I want to do it, but my parents are more hesitant. If you decide to do it, let me know how you feel. ~Sarina

Kathy, I'm 15 and while my dysautonomia has manifested itself slightly differently, I feel for your daughter. I was just recently diagnosed but have had it since 6th grade, so I've had to deal with a lot of the same stuff. Dyna kids is really great, so you should definitely check that out. Also, if either you or Billie have questions or want to talk about anything, feel free to either email or write me a private message. Good luck with everything, Sarina