melly4

Hi, Melissa. Sorry you are having a rotten time and then ended up in the rotten ER, but I'm glad you got some fluids there, anyhow. I hope you are able to see a worthwhile doc soon to help you with your syncope episodes. Wishing you no more bumps on the head!! Melly

Sorry you're in so much pain. I hope it passes soon. And don't feel bad for having a "meltdown" and crying. You're entitled when you're hurting!! Hugs, Melly

Persephone, I have the shakes, too. Sounds like you're having a rough time. I hope things get better for you soon. Hugs coming your way. Melly

Thanks, KC. Maybe I should talk to my doc about giving a calcium channel blocker a try, now that I know 2 people who have had success with them. I'm fearful of trying new meds, because I've had such bad reactions, but I'm still willing to experiment with hopes of feeling better. Gosh, I hate those premature beats!! Melly

Hi, I thought I'd add my experience. Pregnancy was the best I ever felt, and am begging my husband to have another. According to my son's cardiologist, it has something to do with the extra blood volume during pregnancy. But everyone has different variations of orthostatic intolerance, so I guess it depends on the individual. And medications are a definite consideration. Some used to treat various forms of ortho intolerance can be harmful to a developing fetus. The blood volume does not increase as soon as you're pregnant, so the first trimester was rough for me. So, being off medications may be a necessity and may be very difficult for some. It has been my experience that OB docs have a better handle on what's dangerous for a fetus and what's not. A lot of general practice docs will say that you should not take ANYTHING during pregnancy, and an OB doc will give you a list of what's okay. Talk to an OB/GYN. They'll know best and help you through it. I had more sympathy and help from my OB docs than I ever got from my primary care physician at the time. And, yes, there's the postpartum "crash" that many here are talking about. I actually didn't experience it until I stopped breastfeeding. But I'd get pregnant again in a minute if I could, because I love children, AND to have the nearly 2 years of being virtually symptom-free!! Melly

Hi. Just wanted to say I hope eveyone gets better. I also suffer from occasional bouts of vertigo. They seem to always appear in October, so I assume it's allergy-related. I look like Otis the Drunk from the Andy Griffith Show. I wake up every morning with the spins, and can't move my head much until mid-day, after my klonopin has kicked in well. I have found that to be the only thing that helped. I moved here to GA in the last three months. But where I used to live, there was no balance clinic. I'm hoping to find some better help here. I sympathize with all of you. This is such a horrible feeling. My mother and brother have these episodes, too. I think my mom was put on prednisone once, because hers got so bad. Melly

Hi, Dana. Standing or even sitting still for a long period of time can make your blood pool and cause the syncope/near syncope issues. Try to plan your day around not having to be still for long periods of time. For instance, go to the store when it's less likely to be crowded and have long lines. And, yes, I'm also a member of the chronic migraine headache club. Hope this helps, Melly

Hi. If you're speaking of beta blockers, my BP has never been able to handle them. I tried them out of the desire to have the heart palps and tachy decrease. Unfortunately, the beta blockers made my BP bottom out and made me feel really tired. I've never tried a calcium channel blocker, but have a friend who has had good success with one. Melly

Welcome, Dana. My son and I have been told that our problems originated from a viral illness, and that the predisposition to dysautonomia is thought to be hereditary. We have a lot of this type of stuff in my extended family. I hope you find answers and encouragement from the wonderful folks here. We certainly have!! Melly

WOW!! You are truly an inspiration for me to quit my fussing and live my life, even though I am sick and so are three of my children. You have made me realize that I am wasting my precious life complaining about mistreatment from doctors and the general misery of the symptoms. There's too much in life to enjoy!! I hope everything goes well with your husband's chemo. Thank you for such a positive post. I feel uplifted. Melly

Hi. I'm really happy that you are getting some more thorough workups done on your bowel issues. You sound more upbeat, and that's good. As far as the holter monitor goes, 24-hrs isn't enough to "catch" the symptoms sometimes. As for me and Dillon, we did the event monitor for a month. It's kind of a pain to wear one for a month, but it caught every episode and the monitoring service documented what we were doing for every episode, which really provides some insights into what is going on. So, if the 24-hrs doesn't give you anything (and I hope that it does), ask your cardiologist about setting up an event monitor for at least a month. Good luck. Let us know how everything goes. Melly

Thanks to all for the advice on the salt issue. My son has already requested pretzels and pickles. He's always been a salt-eater. His doc did warn that sometimes one acquires a taste for salty foods, and then one day may not need the extra salt once they have aged significantly and have hypertension. I'll let him eat salt to his heart's content now. I took salt tablets when I was in my late teens briefly due to hypotension post-mono infection, and I do remember they were kind of hard to stomach. Thanks, Melly

Julie, your primary care doc should be able to arrange for you to have a test for latex sensitivity. I had the test when I worked in the Blood Bank, because I was having symptoms. Fortunately, our lab went latex-free on all gloves. But there are a lot of other materials used in healthcare that are made with latex, other than gloves. It might be worth ruling out, although the pressure on your neck and positional changes during the procedure sounds like a plausible theory. I hope your pain subsides soon. Isn't there anything you can take besides icing down your neck for the pain? Melly

Julie, you don't have to apologize for any rambling. My son and I both are well-versed in the "brain fog" thing. We like to call it our "tunnel vision-out of body" experience. Happens all the time. Melly

My son and I both have floaters and other visual disturbances, like feeling spacey and tunnel vision with our symptoms. I get the ocular pain with migraines especially. We both also have a lot of facial twitching around our eyes. Don't know what that's all about. Of course, you know there's the warning on video games about playing them can trigger seizures.I can't watch the news channels that have the line of news going by on the bottom of the screen. It makes me feel freaky. Melly

Julie, gee, I think about a nearly $1000 dentist bill would probably send me into a POTS spell, too!! Since you didn't have any numbing agents that would cause a reaction (from the epi), were they using latex gloves? I have a latex sensitivity, in addition to the epi. Just a thought. Hope you're feeling better now. Melly

Welcome, Corina. You'll fit in fine here. I take klonopin for the jitters, and feel like I'm playing Russian roulette every time I have to take any new medicine!! I'm sorry you throw up every day. I just have the daily nausea and occasional vomiting. Lots of diarrhea and stomach pain. There are a lot of people with a wealth of imformation here. You'll make many friends and receive lots of support. I'm sorry you're sick, but I'm glad you found this forum. Melly

Lauren, I'm glad you had a good experience in the ER. Like everybody else, I'm astounded that you met up with a doc who has a wife with POTS. What are the odds of that?! I'm glad it's not TIA, and that you're headed to neurology. I'm going there, too, for migriaine issues. Let us know how you fair. Melly

Hi. I typically go through my "shedding" cycle this time of year, where gobs of my hair fall out and clog up the drain in my shower. I'm lucky to have thick hair. Talk to your doctor if it concerns you. As several people have mentioned, there are medical illnesses and medicines which can cause excessive hair loss. One that comes to mind is thyroid dysfunction. I hope you get answers soon. Melly

Hi, everyone. Thank you so much for all of the support you have given to me and my son. Dillon was diagnosed with POTS this morning. We got a wonderful peds cardiologist this morning, who was well-educated in the field of orthostatic intolerance misery. He didn't put Dillon through more than an EKG, BP reading, and a good listen to him. After he looked at his event monitor results, saw that he was negative for pheo, and listened to us, he made the diagnosis. No TTT or echo was needed. I wish he could be my doc!! The doc gave an outstanding explanation of POTS, and explained that it often seemed to run in families. That's why we are both having problems. He also believed in my theory that this all became worse for me and started in Dillon after our episode of fifth's disease 3 and a half years ago. There was also that magical moment where Dillon demonstrated POTS when he sat up after he had his EKG and nearly fainted!! A med student was present, so maybe there will be a whole new crop of docs that understand all of this. He has put Dillon on extra fluids and has given us the choice of either salt tablets or loading up his food with salt as a first step. He'll see Dillon in a month. If that doesn't help him, he's being put on Florinef. If anyone has any advice as to whether they prefer salt tablets or salting up food, please let us know. It feels funny to be happy about your child being diagnosed with an illness, but after years of symptoms and no answers or disbelief, I can't help but feel like the future is brighter for him compared to where we were yesterday. And he can go back to taekwondo!! Thank you all again for your support and concern. You all are like my internet family!! Melly

Morgan, Hi!! I'm so glad you are reading our posts and I hope you are getting some spunk and some hope back. I've only just joined here in the last couple of months, and had just started to get to know you. You are so witty and knowledgeable, and I miss you. I cope with bad days with laughter, and I do miss your wit. I wish I could say something to make you laugh and take away your tears. But all I can manage is to tell you I'm happy you're here and that I hope your doctors get your diagnosis right, whatever it is, and that they can treat it. mellywhomissessadandsickmorgan

Hi, everyone. I don't know why I'm so nervous about my son's cardiology appt. tomorrow, but I am. I have every reason in the world to be thankful that we got him in so soon and that his pediatric group (for the most part) was really concerned about him and thought he had "orthostatic intolerance" of some kind. Duh!! I guess I'm still in shell-shock over the really poor care (or lack, thereof) he got from the peds cardio back in SC. Prior to any kind of testing, he tried to blow Dillon's symptoms off as being psychiatric. Yeah, right. Then, of course, the results of the month-long event monitor came back and told a different story. By then, we had moved to GA. I so want him to feel better and be able to be involved in his sport again. The peds docs have given him a "nay" on any strenuous activity until he sees the cardio guy, and wisely so. He's had a lot of chest pain, and his BP really scares me the way it goes up and down. And, of course, he's got the tachy, syncope, and bowel issues like I have. I want to help him, but I'm afraid that we both will end up being defensive the moment we walk in the door of the dr's office in the morning. PTSD bad doc experience, I guess!! I've promised myself to be calm, let Dillon talk, tell the doc our story, and then patiently listen for whatever comes. But if we don't get treated right, my red hair takes over and bad things fly out of my mouth!! Thanks for letting me express my paranoia of some doctors. They're not all like that, but as Forrest Gump's mother says,"Life is like a box of chocolates: You never know what you're going to get." Same with doctors!! I need to be reminded of how many doctors are out there that truly do care and leave no stone unturned until they can help their patients. I hope we get one of those tomorrow. Melly

Lauren, I'm definitely glad you are getting this checked out ASAP. My son and I have a lot of visual disturbances, but your episode sounds beyond extreme. Good luck at your doc visit. I hope it's good news and can easily be treated. Please let us know the outcome. Melly

Poohbear, Sympathy and hugs to you for what you're having to deal with right now. I know you won't be able to post for a while. We'll miss you while you're away, but I'm so happy for you that you are able to go to Vanderbilt. When you are able, do keep up us posted on how your visit there goes. Melly

Hi, Roselover. Sorry about Vanderbilt and your "tummy troubles," as my little ones would call it. I wanted to let you know I'm thinking of you and hope you get answers from Mayo. I do hope you feel better soon. Please let us know how things are going when you are able. Melly