ariella

hi. Did an mri of the c-spine 2 years ago...at least 2 years ago. Showed some degenerating discs in the c-spine )and a herniated one or two in the lumbar spine. Docs tell me many healthy people have this and they don't think this is the cause. My POTS doctor suggested an orthopedist. I have no more patience for docs. my health insurance is unlikely to cover the cost of a repeat mri.

Hi Rita thanks for the info it's the slow walking that's concerning them as opposed to the balance thing. In fact when I started taking midodrine I tried doing the "drunk test" Voila! I was able to walk one foot in front of the other. This was great news. (No one will be surprised how many neuros saw that i couldn't walk a straight line and wrote that my exam was normal!) But like you said, practicing walking is everything to me, if I baby myself one day with laying in bed and reading a good book, I could hardly walk at all on the next. all the best, Ariella

thanks to both of you! Dawn, sorry to hear you're also having trouble walking, but it calmed me down a little. My doc didn't think the walking was being caused by pots, but I've learned to be skeptical about what docs say, knowlege is always changing... In answer to your question, I take midodrine, but after a few months of being great it stopped working. I was supposed to be taking florinef together with it, but by the time I got it (I live in Israel and the supplier was no longer bringing it in, so had to order fro Canada and have it brought to me) the midodrine was no longer effective. Now I'm taking both medications and feel horrible. Worse since I started the florinef. At least don't think I'll gain weight on it, it destroyed my appetite!! Ariella

Quick question, just started florinef four days ago, so far if anything I feel worse than before, is this expected? and maybe not such a quick question, the doc who diagnosed POTS told me that it only accounts for 80% of my total symptoms, he thinks the neuro may be missing something, been to several neuros and they can't figure out why my walking gets really slow (I could be otherwise feeling fine and it feels like my feet are defying gravity to move) Does this happen to anyone else with POTS or should I be persuing this one? I feel like a hypochodriac, but some of my symptoms seem really close to Shy Drager, but no one is looking in that direction (thank God!) I'm a 34 years old female, very unlikely to be Shy Drager. No more strength to run after docs. I see that at least is pretty common around here. thanks to all Ariella

Are we all sure that it's the antibiotics causing the symptoms to get worse and not the infection itself? By me any infection, even a viral one like a cold, is a nightmare. Right now my daughter has strep, I'm terrified I'm gonna catch it. If someone can answer about the dental thing though, I'd appreciate it. Are we supposed to be on antibiotics for dental work like someone with MVP? Ariella

hi Roselover, My sister..28 years old...has been suffering for many years with gastro stuff, has undegone many tests and has yet to be treated succeesfully, or even given a real diagnosis. Recently she had been experiencing chest pain and the ekg showed T-waves--abnormal. Being that she was not having a heart attack at the time (and maybe because she's a young female, hate to say it but it's probably true that if she was a man she would have been admitted to the hostpital immediately) they don't know what to make of it. She has not yet explored whether she has POTS. I have reason to believe that also my mom should be tested...The thought for now is too scary for them because they see what I am dealing with. I think that if someone has persistant gastro stuff plus heart stuff, it's worth checking out, especially with a family history. On another note, I think you mentioned that your husband is a minister, I'm the wife of a rabbi, how do you deal with the constant social situations? Are you up to entertaining? Ariella

hi jlb! do you take antibiotics before dental work because of the POTS? I wasn't instructed either way, and it's time to go for a cleaning... ariella

hi, maybe someone out there can help me, in addition to the POTS I've been having some (sometimes) severe, sometimes very annoying upper back pain. mri's are negative, so the possibility of it being something on the spine causing the POTS is very unlikely. Cardiologist is sure the pain is coming from the spine. Can it possibly be referred pain from another organ that is affected by POTS that is being felt as back pain for some reason? I've also coughed up blood several times in the last 6 months, didn't get that checked out as well as I should have (sick of the whole medical maze) , but lung x-ray is ok and so are basic blood tests. Autonomic doc says it's unrelated to the POTS. They don't even know in which direction to go, and I'm just not up for a wild goose chase. So instead of me ignoring it, anyone have anything similar or can give me some advice? thanks...this site is great By the way, I should probably add this as a separate post, but I was looking at the photo albums, and you're all so beautiful. Being sick for a long time, my own self image is often down, and to see all of you looking so pretty made me feel much more attractive too!! Ariella

Linda Joy, Oh no, I hear where you're at, my med (midodrine) doesn't seem to be helping anymore, although it wore off more gradually,and it's a scary feeling, like being stuck out in space and thinking "what now?" I don't have experience with your meds, taking my first dose of florinef tomorrow morning, but even when the midodrine was working, if I overdid it it didn't work. Those are rough moments. In your case I definitely think it could be both factors, I would call the doctor and try to distract myself with something till I would feel on steady ground again. You probably overdid. I do that too. It makes me think I'm well, but then I usually crash. But I'm really accomplishing a lot more now that I don't put pressure on myself to do everything. (Even people without POTS get wiped out from too much sudden exertion!) Sometimes i say that i think i was put here in this world to learn patience because it's been a big challenge for me in the last few years. lots of love, hopefully by the time you read this you'll already be feeling more like yourself ariella

hi Susie I'm also a Newbie here... So about work, I'm an artist/musician, there are days I'm able to concentrate and there are days I can't. In fact one of the first signs that something was wrong with me is that my hands would become very weak for seemingly no reason, and I couldn't focus and start tripping up on the guitar strings. Too short of breath to sing normally. So, I would do my painting and music at my own pace. When they started treating me with meds it was like I suddenly had my life back a good several hours a day, I took my music right away into the studio to record with like the biggest smile. And redid a lot of paintings that looked just fine to me with brain fog. One of my closest friends is a very accomplished musician (right now I'm more of a wannabe!), I remember seeing him and saying God gave me back my voice for half an hour last night, it's the most awesome feeling in the world. I think I was crying --really--from joy.. But now the meds seem to be hitting a slump and I had to decide what to do, I'm pushing it and going for it...guess it's my way of fighting. Thankfully the people I'm working with are very supportive, so when I space out on them they're patient about it. If I had to commit to a 9 to 5 job, don't think I could, but then again I'm the mother of 5 youngish kids (ages 3 to 13), that's five full time jobs with overtime. But I guess what I'm trying to express is that continuing to work in some capacity is a real lifeline for me, and a great distraction. You can sit for long periods of time? I get pretty dizzy if I sit at the computer for more than an hour. If I had a desk job I would definitely get up and walk around every so often. All the best Ariella

you have me laughing about the nervous system thing. so now I know what that funny look I get once in a while is. Someone else wrote in about it getting confused with autoimmune diseases...I have friends who called me and said they were going to a dinner/lecture about autonomic dysfunction and I reluctantly agreed. It turned out to be a lecture on autoimmune diseases and how macrobiotics will cure that....well, I was hungry so Ii had a bowl of buckwheat, yummy, and then promptly blacked out!! Sometimes I explain that most peoples bodies are on automatic pilot, mine is malfunctionong and needs an extra boost.

Hi. I'm new here at the forum. POTS has been going on by me for a very long time until they finally came up with the diagnosis. I have been taking ProAmitine and for a while felt like I had my life back for several hours a day. This lasted for a few months, and then a few weeks ago the effect of the med seemed to be lessening and lessening, now I'm not sure if it's really doing anything good for me anymore. Is this normal? Should I stick with the medicine anyway? What does this mean? I seem to have a proressive form of POTS, started as a nuisance, now it's very debilitating. I just keep going on good attitude (usually). Why would midodrine work for only a limited amount of time? Is it addictive?

yeah...know what I hate most? people always tell me how wonderful i look on the days i feel the worst. So, for people who don't really care but are just being nosy I answer vaguely that it's in neurology. To people who care i tell the truth, that it's a breakdown of the part of the nervous system that controls things the body does automatically, mainly that the head and the heart aren't communicating in a great way. Most people respond well, although sometimes people say stupid things like, well thank G-d it's not MS. It took a long time until they figured out the diagnosis, so i'm grateful i can explain it now without getting funny looks. But try not to feel pressured into telling your personal stuff to people who are just not going to be connecting to you in a helpful way. Rather not go into details, but I learned that the hard way.

Hi Dayna I can definitely feel with you. I'm the mother of 5 children, ranging in age from 3 to 13. My POTS seems to be getting progressively worse over the years. I've been in and out of a wheelchair, often i'll go for a walk aound the block and have to call one of my children to come "rescue" me. I throw up often, am very dizzy, have shockwave chills, and it feels like the blood just isn't getting to the right side of my body. very painful. But one thing that I've learned with time is how to manage the symptoms better, even if they're objectively worse. So I'm functioning somewhat better even though I feel very very miserable. I've learned that I have to force myself to do some kind of activity because it builds tolerance. Forcing myself to take walks helps a lot. Especially when I can't walk, I force it along a little. I also started to get a feel for what triggers make it worse and try to avoid them. One of the biggest gifts a very close friend gave me was to teach me not to judge myself by whatever expectations for myself i'm not fulfilling. The kids just need to know you love them. Sure my kids complain that we don't do things they'd like to do. So here again is my friend telling me that all children complain, and parents can't take it personally, and for me it's absolutely dangerous to take it personally. But really a person can only give real love if they can make a space to love themselves, for me if I don't keep my personal headspace good, I can get really cranky with my kids and let my exhaustion take over. It's so hard. The mental exhaustion is the worst. I try to avoid negative people. I've begged my friends to laugh at me, isn't this ridiculously funny how I can't walk? (nobody ever thinks it's funny) but it keeps everyone including myself from feeling sorry for me. Hopefully..and likely..your symptoms will improve, but I think as your kids grow it's going to be really important that they see your husband being supportive. It's going to be so important in how they're going to view helping you out when you need it. Sending you lots of love, Ariella