ariella

So, here's the update. I take 60 mg of mestinon 5 times a day (roughly every 3 1/2 hours) It takes care of the POTS as well as the muscle issues. I can tell if I'm late in taking a pill--even 10 minutes late, because the POTS symptoms kick in. When I was on a lower dose, the POTS would get bad in the evening. It also helped for the fatigue, as well as for the unusual pain which I thought was circulation, but turned out to be muscular. When I'm overtired or otherwise sick with any kind of infection (as in now), the pain comes back. The very specific pain where the T-spine and C-spine meet seems to have just been muscular as well, as the mestinon helps for it. The pain was probably aggravated by holding and bending over a guitar. When I play too long, the pain comes back, even with mestinon. Unfortunately, my breathing issues are still not under control. I also slur my speech from time to time like a drunkard. Mestinon helps, but is not enough. The next line is to add prednisone or immune suppressants, which is not great. Alternately they can do plasmapheresis, but they usually like to reserve this option for real respiratory crisis. Right now I have another infection, so my breathing is very difficult (the muscles that work the lungs are weak). I'm thinking about checking into the hospital tomorrow for treatment if it gets even slightly worse. It's holiday season here in Israel, and would be a real bummer for my children not to have their mother at home for the upcoming succot holiday, which lasts a week. We don't have extended family here. The community is wonderful, but it's hard to leave a family of five kids. I miss all of you, and miss writing in. It's been really hectic. I go between functioning pretty well (at which point I'm busy catching up and don't have time to sit by the computer) to crashing (at which point I don't have strength to sit by the computer). But I do check in from time to time, and wanted to let y'all know that your friendship means a lot. Ariella

Please send "Morgan" my love. Her wit and insight keeps me going. Love, Ariella

Any possible connection between ear infections and ANS impairment? Since my POTS started acting up, been having frequent outer ear infections. I imagine this is coincidental???? Ariella

Just a quick note to let all of you know that even though I haven't been posting you're all still in my thoughts. Wishing one and all an easy weekend, Love, Ariella

Hi It always gives me pause when I'm too sick to do testing. The problem is that until they do testing the treatment also gets delayed, and it's a cycle. When these things happen I try to console myself that maybe the place I was supposed to do the testing would have been one big waste of time and valuable energy. Hopefully the Mayo GI will be able to do for you what they may not have managed to do in two tiring weeks in Vanderbilt. Thinking of you, ariella

Melly, This is so familiar. When I'm at my potsy worst I'll black out after meals and throw up because of the drop in blood pressure. It's worse if I have a lot of carbs. But then there are periods of time that I could tolerate food better, as long as I eat only a little at a time. No point taking me to a restaurant for dinner. The doggie bag contenys outweigh what I've managed to eat. I'm also too thin. The kids pediatrician said he's scared I'm gonna fly off the mountain when the winter winds come in Anyone try increasing fluids with food and notice a difference? Just curious Ariella

Marie, I started taking mestinon not for POTS, but for myasthenia gravis. I was taking midodrine at the time for POTS. I had to stop the midodrine because in me they weren't reacting well together, so now I only take mestinon for both conditions. It took me a few days to adjust in terms of the autonomic stuff, and now I really see a difference with the autonomic stuff. I am rarely dizzy, rarely vomiting. But for me that didn't happen until I upped the dose because of the severity of the myasthenia. When I was just taking 3 pills a day, the POTS would hit me full force in the evening as the last pill was winding down. Now that I'm up to 5 pills a day-and sometimes one in the middle of the night, it happens less frequently. I second Corina's comment about feeling cold. I used to feel cold-no- freezing-- all the time before mestinon, and now I find myself looking for air conditioned places to sit (it helps for myasthenia-related breathing issues) One thing I've found is that mestinon is a medication that likes to let you know that you've taken it, meaning, I find it very important to take it at regular intervals, and not to push a dose off by even 15 minutes, or I start to feel a difference. Not so sure how much this is vis-a -vis the POTS, but for sure with the myasthenia. Always take with some crackers, at least at first, it can be hard on your stomach. hope this helps! good luck! Ariella

hi, I get nauseous whenever my blood pressure is fluctuating widely. Often to the point that I'm throwing up. Are your other POTS symptoms also worse in the morning? Ariella

Morgan, I'm chiming in here real late, been away from the computer for a few days. I am horrified. I imagine you live in Canada and cannot possibly sue once they figure out the real diagnosis? If your ANA is elevated YOU MUST SEE A RHEUMATOLOGIST or IMMUNOLOGIST Autoimmune diseases cause very interesting phenomena over several body systems, and could be very dangerous if not gotten under control. My positive ANA was taken very seriously. Oh, BTW, no psychological illness can cause what you are going through, nor cause a positive ANA. I know you know that, but it's good to hear. What they did was criminal, because it will make it psychologically harder for you to seek medical attention when you need it. I have an aquaintance who was told that her respiratory crisis was in her head and she could go home, without even doing pulmonary function tests. She used reverse psych on them and said, ok then, send me a shrink fast, because I must be really messed up. The shrink saved her life by insisting on pulmonary function tests. She was sent to the ICU where she remained for 3 weeks. They told her in the ICU that had she gone home, she would have probably died in the night. This was at a major, high level medical center. Thinking of you and saying a prayer, Ariella

Perse, So happy for you! And it's just in time,too. I was worried that no one was going to treat you, and you were going to end up in a dangerous situation between your medical condition and "pushing it" at school. Big Hug Ariella

hi I've found that what I eat also makes a difference. When I'm going through a potsy period of time, a bowl of spaghetti will make me black out. In general, I limit carbs. Also, like others mentioned, more frequent small meals/snacks are much easier to deal with than sitting down for a normal portioned meal. Plus, if I eat even a tiny bite after I feel satiated, I get dizzy, nauseous and vomiting. ariella

Laura, I still have one blood test to go. I did a somewhat positive emg in the side of my face-no joke-(it was positive enough to show something's going on, not positive enough to give the diagnosis on the spot). The big relief today is that my cat scan was normal, some people with myasthenia gravis develop tumors on the thymus gland. The doctor is treating as if it is myasthenia gravis. Some patients have no "objective findings" but still have the disease. I at least have some objective findings, and good response to treatment. I am able to walk normally for the first tiime in 3 years! (I still use my cane because it preserves the muscle strength. The mestinon is not a cure, and won't save me if I overdo) Now if only they can do a little more for the breathing... I consider myself lucky that I can "kill two birds with one stone" (Corina?here's an idiom) and take mestinon for both the POTS and the myasthenia. I'm also much less fatigued, and am able to differentiate now when the POTS is getting at me and when it's the myasthenia. Hoping to go play some guitar in the studio next week, I'm in the middle of a project that got pushed off more times than I could count. Thanks all of you for caring, it makes such a big difference. Love, Ariella

thanks guys It probably was blood pressure related. I was off the mestinon that morning because of the testing. I probably just got exhausted from the trip, and that sent my blood pressure kaploo-ee. The breathing seems to be not all POTS related. The test they did was pulmonary function combined with neostygmine, to check for myasthenia gravis. The test was positive. And now to do something about it...well, my neuro is on vacation for a month. For now I'm addicted to mestinon. Ariella

Hi everyone. Welcome to all the new people. Strangest thing happened on the way to the neuro today...I was on an intercity bus, it was a few minutes after we had descended from a highish elevation to a lower area, and I suddenly got this incredible pressure pain in my head, both in the back on the bottem, and maybe a little in the forehead area, I think it also radiated down the neck. (long day, so the details are a little fuzzy, sorry) Not too comfy around the ears either. But it was very painful, a pressure kind of pain. Lasted for a few minutes and then went away. Funny thing is that I was thinking to myself a little before, as we passed the airport, if I will be able to fly again. I guess I got my answer? Should I assume it was from the change in altitude? Weird is that it happened when we were already in a flat area for a few minutes. Hugs, Ariella ps-no, I didn't mention it to the doctor, I was on the way to get testing done for my neutromuscular condition (which the mestinon is Thank God helping tremendously. Up to 60mg 5x a day.)

So, they say seeing is believing. I like the hospital idea better than the cortisone. Cortisone will make nearly anyone with any condition feel better for a certain amount of time, and also alter the results of blood work. Not a great thing when you need diagnosis, as you have something going on on top of ANS stuff. Been there, done that. After 3 years of an additional illness, I finally have a diagnosis, just when everyone was about to give up. And I was already having very serious complications. So try to hang in there, I know it's hard. We're with you! WantingtoheargoodnewsfromMorgan, Ariella

possibly autoimmune disease issues brought it out, because they nearly coincided with real onset of symtoms. But, I'm probably genetically predisposed, mom and sister on beta blockers, daughter showing signs. BTW, welcome, I haven't really been posting much for the last couple of months because I've been preoccupied with the above mentioned autoimmune issue which seems to have "blossomed into a different flower". Ariella

Perse, You've come so far with school. But your fluctuations really worry me, and the added strain of school may be really frustrating. I struggle with it all the time, I call it one step forward, two steps back. Is it possible to do at least some of it via distance learning (online casses and the such?) This is for your master's, right? There's a huge selection of masters programs from reputable universities online. Please follow up with Laura's advice about checking the adrenals. love, ariella

Morgan, Just to pick up on a small comment you made about the TIA's. For a while they thought I may be having TIA's, eeg's were normal, turned out to be sudden hypoglycemia, just part of the dysautonomia menu. It's so scary knowing something's awfully wrong and not getting adequate medical care. Been there for close to 3 years, and if it wasn't for the insistance of a doctor friend of a friend who saw me at my worse, I probably would have given up. That wouldn't have been a good thing, beacause after a long time, they're finally onto what it is (aside from the POTS) and left untreated, it could have been more than serious. I'm told that Columbia Presbyterian hospital in NY has some kind of distance medical consultation service, possibly for free. It's far from ideal, but maybe it's worth a shot. Also, I know you're wiped, but please please keep good records of everything. Things written, summarized, and to the point without humor seem to be most helpful to doctors with limited attention spans. Sending love and prayers, Ariella

thanks for all your replies. To answer your questions, myasthenia gravis is an autoimmune disease that causes sometimes severe muscle weakness. Apparently it has been responsible for my walking difficulty and the breathing difficulty that sent me to the hospital 3 times last month. And for a lot of fatigue. Yes, I'm on mestinon, 60mg 4 times a day. It overloaded my midodrine, though, so now I'm only taking mestinon. So far so good. While the mestinon is active, I can walk normally without my cane. And then it wears off and my muscles pretty much run out of gas...they will probably be adding additional treatment when all the testing is done. I had a single-fibre emg yesterday-basically the doctor put 15 electrified needles into my face (yes, my face-the side and forehead) and tested neuromuscular transmission. The doctor has exceptionally good bedside manner, but the only thing I could think of the whole time is that I'm grateful it's me and not one of my kids. It showed some evidence in the direction of myasthenia, but was not conclusive. He told me that myasthenia is sometimes difficult to diagnose because symptoms and test results tend to fluctuate wildly. Interesting is that I found some research connecting dysautonomia with myasthenia. So maybe this is the cause of my POTS. There is no cure, but sometimes it can go into remission. Laura, you're totally right about this test being important. Truthfully, even my gp was a little uncomfortable about doing a test that requires having a shot of atropine handy. I just read about someone who died but was then resuscitated during this test. Of course, that's not the norm. But if this is indeed myasthenia, the breathing complications are dangerous and need to be properly evaluated and treated. Gonna get all this done as soon as possible. They have to run some other tests as well. The neuro is the head of the department in his hospital and will hopefully get it organized soon. Hoping my insurance won't give me a hard time, they weren't thrilled to approve the emg because I'm persuing medical care in a different city. Ariella

Hi India, I'm feeling guilty about being one of the florinef-bashers in the threads that you mentioned. I cannot tolerate florinef, but have recently found out that it's because of another medical condition that florinef will worsen. In other words, if this other (neuromuscular)condition did not exist, could be I would have tolerated it. Good luck! Ariella

Hi everyone. Miss all of you, I have been lurking, but not posting. To make a long story short, I am now being treated for suspected myasthenia gravis, and the treatment is helping. But, as doctors are scientists, I still have to complete all testing. So, they are sending me for a Tensilon test, in which they inject neostigmine and see what happens. I am told it can cause the heart to do funny things. But don't worry, the doctor says, they keep a syringe filled with atropine just in case. Would anyone else here be worried? I have not been in touch with my autonomic doc and my gp is on vacation for another week or so. Probably no one here has experience with neostigmine, but any thoughts on atropine? At least life isn't boring love to all, Ariella

Persephone, Just want to let you know that I'm really sorry about what happened. Was in a similar situation earlier this month. It's bad enough you are feeling sick enough to be in hospital, but when they don't do anything to help you because they aren't sure what to do for you---that's totally unacceptable in my book. It's not like you're stuck out on a desert island hospital with no phone service. If the attending doctor isn't sure how to proceed, IMO he has a responsibility to consult someone who does. It should not be your job when admitted to also have to find medical care. Were they really out of monitored beds? You probably also felt humiliated when they equated your POTS with some minor, inconsequncial thing...You deserve better than this. I hope the food was at least edible... sending love, Ariella

Emily, You wanted to know "what's up with feeling like a failure". You (like me) truly believe that positive attitude can make it better. It can. and it does. But hasn't made it better to the point of taking it away. So maybe you feel that if you would have more say, spiritual strength, you wouldn't need the help as much. And maybe that's what's making you feel guilty? Just a thought, I felt the same way for a while...I have a good friend who remind me that real strength is not in what we can or cannot do, rather if we can deal with equanimity and peace with what we've been given. Ariella

Thank you so much for this thread. I just told a friend today that my biggest thing going for me is also my biggest downfall: I don't think of myself as a sick person. It's also a hard call when a chronic illness fluctuates in severity. Just happened to me today, 2 students called asking if they can spend Shabbat lunch with us. Now, we haven't been having guests for a while. It just gets too uncomfortable for everyone when the hostess has to lay down in the middle of the meal. And I know that having to speak with guests is the worst thing for me right now, having some neuromuscular breathing issues made worse by speaking. But they called when I was feeling realatively well, and my kids miss having guests, so I told them to come. I don't even know their names, let alone how to reach them. Too late to cancel, anyway. I hope they like speaking with my kids Ariella

blackwolf, It took me a while to get used to the idea that I walk with a cane. Especially as we live in a smallish community, people notice things. I'm also in a wheelchair on and off. The best thing I ever did for myself was not hide in the house because of my disability (even prediagnosis, when sometimes I would get curious expressions, as if to say if you don't have a diagnosis, how can you be disabled?-at least my interpretation at the time...) Getting out, by any means necessary, and going about my life as much has possible is a big factor in keeping me from getting down. Evie's suggestion about personalizing your walker made me smile. It reminded me of something I did to my first cane. I hand marbilized it with paint, and then wrote inspirational sayings all over it. I said that if I need a cane at the age of 32, gonna do it in style. It turned out to be a big discussion item, with people gathering, reading, sharing and all of us walking away uplifted. I no longer have it, I was walking to the grocery one day and a real old, senile, man, must have been close to 100 years old, was begging on the corner. I gave him some money, and he asked me for my cane. I gave it away. My new one is unadorned and lightweight. Ariella