ariella

one of the good things that has come out of needing to accomodate my POTS symptoms is that I realized that our household was too hectic. And we're working on making it more tranquil. I realized that we have more clutter than is controllable in our limited storage space, and the stimulation of seeing things not in order doesn't do good things to the ANS. Easy to happen in a large family. Still trying to get others to help more, I try to explain to them that it has nothing to do with Mommy being sick, rather has everything to do with having good manners. Sometimes if I calmly remind them that they will feel more comfortable if the house is orderly it gets them moving...(sometimes) Pacing myself with cooking helps. I've learned that if I leave dinner prep until a little before dinner, our dinner is inevitably "downsized " (and I'm too worn out to eat) But when I really hit a slump, I gotta keep reminding myself not to judge myself by how the house looks...

(((Nina, are you sure that Dr. Goodkin doesn't also have a clinic at Hahnemann? Maybe I'm mixing his name up with someone else, this is all very foggy to me right now, but when we used to live in Philly and I was prediagnosis, I saw someone with a similar??? name in Hahnemann, who recommended that I see a neuro...I never followed up. Could very well be I'm mixing him up with someone...))) oops, finally remember docctor's name, similar to goodkin, but not it. tried deleting this post, couldn't figure out how. Apologies Ariella

welcome. Many of us took years to be diagnosed properly. Although dysautonomia is no fun it's a relief to finally understand what is going on. (my diagnosis took 11 years of misdiagnosis) This site has been SO helpful, not only in terms of support, but in hearing what works for different people. The general rule is that the are no absolute rules. What works for one may not work for someone else. For example, my body doesn't tolerate carbphydrates well, it sends my blood pressure crashing down. Others may not have that experience.So, welcome, please lurk on the site, I'm sure it will be helpful! Ariella

About Mestinon: The other, original, use for mestinon is to treat neuromuscular disease, specifically myasthenia, which is a disease in which the muscles are severely weakened. I'm not sure exactly how it works, but it does stimulate something in the neuromuscular junction, which would probably explain weird muscular side effects.

welcome back Corina! Ariella

anyone use "grabbers on a stick" instead of bending down? What kind?

After having a very dysfunctional week, my house looks like it was invaded by a couple of non-professional theives. Thought it may be fun to start a thread on POTSy home-ec, what helps, what harms...easy dinner suggestions welcome! Ariella

becky, you may want to see what the potatoes are doing to your blood pressure. Carbohydrates usually bring out some of the "best" of my POTS symptoms. Ariella

Welcome, Does your doctor have any idea what is causing your POTS? If your stroke-like episodes persist I would ask the doctor if it's worth evaluating for mitochondrial disorders, which can cause stroke-like symptoms and dysautonomia. It could also be causing your muscle weakness and eye symptoms. Good luck! Ariella

just to add a "me too" BTW, remember after getting diagnosis went to celebrate being finished with the doctors in a certain hospital who really helped make my life a nightmare. Went with a friend to a cafe and ordered what could be best described as a chocolate volcano. Awesome. Except that I promptly blacked out!

Julia, Sometimes when the doors open and good things start happening, more good things roll in. Wishing it to happen for you. You've been through a lot. Ariella

yeah, it wasn't a total disaster, but I was not admitted for POTS symptoms, and they did absolutely nothing to resolve what I was sent there for. Nor did they do the appropriate testing. And they were supposed to be evaluating something potentially life threatening. GP was reluctant to send me, he knew I would get a run-around, but was breathing very poorly. My point is that not only us POTSies have a hard time in the ER!

Sure the results bear YOUR name? I can imagine what you must be going through right now. I just was NOT treated for severe shortness of breath because of one hospital pulmonary function test (the only one of several that was able to register anything) that even the technician said is invalid because it was inadequately measured. That felt pretty big at the time, but this must be huge for you, you've been basing all of everything on this. Has treatment for ANS been working? BTW, my POTS doc made the diagnosis at the time when my bp was not low, he said the main diagnostic feature is increased tachy upon standing. Feeling your frustration so strong. With you. hugs, Ariella

Why doesn't my doctor prescribe mestinon? I've been begging to try it! I have severe muscle weakness and breathing issues, and taking it may clear that up as well as the POTS!

I feel feverish often, usually late afternoon. Sometimes my body gets uncontrollably hot if I'm in a hot room. Was just in ER for 2 days and the noted that I while had a slightly elevated temp (I was in for shortness of breath and muscle weakness probably not from dysautonomia). My hands and feet were cold. They at least found me interesting in that respect. No luck in dealing with the breathing and weakness.

yup, was supposed to do a specialized emg on wednesday. They told me not to come in until my shortness of breath is resolved. And without the emg, they won't try something to help me for the muscle weakness. Still cannot walk very much. Nor breathe. I told them that if they want to discharge me they will have to wheel me out and handle the paperwork themselves. Friends pitching in and caring for my family, sending over meals...

a simple "yes" even short car rides bring out the "best" in my POTS symptoms. Sometimes I even feel like I'm still moving in the direction of the car after I get out!

Hi Just back from the ER. Was there for 2 days. Didn't go for POTS-related symptoms (at least I don't think so), doing workup for something neuromuscular or maybe mitochodrial disorders. Was having a relatively good day on Tuesday, but of course overdid and carried my crying 3 year old about 100 feet. About 2 minutes after putting her down, was extremely weak and felt like I was suffocating. It wasn't going away. Someone went to get my husband who brought me home in the wheechair, and I thought I would just be able to rest it off. Next morning was no better, GP sent me to the ER. I'll spare you the details, it's more relevant to a different forum, but the one good thing that came out of it is that the admitting nurse had worked for years as a nurse in a dysautonomia clinic (FD), and knew all about my POTS symptoms (which by then i was experiencing as well) That is so unusual. She took interest and referred me to a doctor in my area who she thinks could help me out. Additionally, I've learned that if I tell them POTS or autonomic dysfunction, they don't know what that means in the local vernacular. I finally hit on saying that I have dysautonomia, and suddenly everyone was interested and sympathetic!!!...they probably have some experience with familial dysautonomia (I live in Israel and FD affects mainly European Jews) What a twist! Found the magic word! ER visit was otherwise very unproductive, they kept me overnight for observation and was sent home feeling no better than when I was admitted. They won't try to do anything for the other condition until I complete some more tests, but the catch 22 is that they won't perform those tests when I am feeling so sick. Very frustrating. Ariella

hi Just because you are not wheelchair bound does not make it unethical to take a handicap apt. You even admit to having trouble going up to see the place on the 3rd floor. Now imagine doing that with groceries on a POTSy day! Not everyone who needs a handicap tag and space for their car is wheelchair bound either! I've moved 11 times in my marriage of 14 years. (don't ask ) It's a lot of work, aside from the emotional upheaval. But it's also a nice feeling to be starting fresh. Can your church send over some high school kids on vacation to help you pack? Wishing you happiness and serenity in your new home! Ariella

Hey, went for pulmonary function tests yesterday, flunked them. The pattern came out as restrictive lung disease, which is associated with many disorders, including a specific neuromuscular one I'm being evaluated for. Just exploring possible differentials, anyone have this and been told that it's somehow related to dysautonomia? Specialized EMG tomorrow. Not looking forward. Thinking of what to treat myself to afterwards... Ariella

Hi Linda, Don't know if it's from going off the zoloft (I don't have experience with zoloft), but I was extremely fatigued and irritable on florinef. Not sure if it is a side effect of the florinef because I have another apparently neuromuscular condition going on which precludes the use of florinef, but in any case, the only time I really felt like I was losing it, or had already lost it, is during the 10 days I tried the florinef. Hoping it gets resolved soon, Ariella

hi Persephone, Also get really slow heartbeats with skipped beats and sharp chest pain. It's when I'm most symptomatic. Was actually surprised to be dx-ed with POTS because of it. If your heart is going real slow and stopping for a few seconds at a time, time to insist on medical attention, don't let anyone brush you off, as one wise doc once told me, ultimately I am the only one responsible for my care. One piece of advice, when seeing the doc, be as objective as possible, don't emphasize how you are subjectively feeling, rather tell them excactly what's been going on, how often. Probably a good idea to monitor bp. Are you taking any new meds, especially beta blockers? Maybe the medicines are aggravating this? Good luck. Let us know how you're doing Ariella

welcome Traci You should be proud of your neuro for sending you to an autonomic doctor. Many of us her have been bounced around here for years misdiagnosed and undiagnosed. Wishing you luck on your journey, we're here if you need us. POTS causes many weird symptoms, see list on DINET....... Ariella

First hand experience, it's a surreal kind of nightmare when bombs go off near you. With many bus bombings in Jerusalem and 2 children who travel regularly with public transportation, I can understand your relief mingled with mourning for the victims. Once a bomb went off at the intersection where my daughter would have been at that time had she decided to go to school that day.... blessings, and may the physical and emotional wounds inflicted on the victims quickly heal Ariella

Hi Ling Glad to hear it went well. We have quite a few South African doctors here in Israel, From experience most of them have been a pleasure to deal with. I've been told, don't know if it's true, that they get more extensive training than the average American doctor. Speedy Recovery Ariella