Maisie87

Hey Nikki, YESS I have dizziness lying down, sitting, standing is nearly impossible! My doctors said it is possible to have dizziness while lying down with POTS.. he couldn't expain why it happens but some of his other POTS patients have the same issue. I'm checking with an ENT to make sure there isn't an inner ear problem. You aren't alone. I really feel like I have vertigo sometimes, even when I am perfectly still. maybe check with an ENT.. How long have you had POTS?.. you're 21 right? I'm 22, so if you need anyone to talk to you can message me any time. feel better Maisie

i get that in my arms and face.. you hate bananas? is it b/c they're yellow ..? or b/c they're mushy..

thanks sue, and thanks for recommending those tests!

Kushiels! weeelllllcoommmmmeeee! I'm so glad you found this forum. 17 years wow- I can't imagine your frusteration. My journey to a diagnosis was only two years and that was agony.. I'm glad you have an appointment with a cardiologist- damand a tilt table test!! make sure you get one. Like many of us with dysautonomia, I was told my racing heart, IBS, dizziness, cold sweats, chills, insomnia, confusion, exhaustion, neck and back pain, headaches... (i could keep going) was all due to anxiety! no way.. Good for you for being persistant about finding answers. Most of us on this forum, from what I've read, went through an average of several months (some several years) of doctor hopping before reaching a diagnosis. Pain isn't one of my main symptoms like yours- I'm not a doctor at all, and don't know what that points too. But so many of your other symptoms sound so familiar to me. I'm so sorry you've been dealing with this for so long. Hopefully things are about to change for you- answers and peace of mind. This forum has so many wonderful and compassionate people, it has served as daily validation and companionship for me. I hope we can do the same for you! feel better* Maisie

I've had the MRI and CT contrast. MRI contrast was fine. CT contrast did give me those weird sensations like the weird taste, warm rush, felt like I had to pee! reactions are rare but possible. Good thing is ALL imaging techs are very prepared to deal with allergic reactions to contrast. So if there is no time to do an allergy test before your scan, then remember that even in worst case scenario- you'll be okay b/c the imaging techs know how to deal with this. please try not to worry good luck, let us know how it goes. Maisie

I just got back from my appointment at Emory with Dr. Leon. He has dealt with ANS patients before and been involved with ANS centers around the southeast. (he's a cardiologist) The appointment was good and bad.. I liked him because he was brutally honest- if he doesn't know an answer to something, he'll say, "I don't know" and try to find out. He told me that POTS is more of a description of a compilation of symptoms that scientist and doctors really don't know much about.. ie why it comes and goes. We all know this. He wasn't at all trivializing my condition, just explaining that the medications recommended to me aren't meant to "cure", but to alleviate symptoms. In the meantime, he promised that he and many other doctors will keep researching this mysterious malfunction of the body, lovely dysautonomia. He is referring me to an endocrinologist to test my adrenals and pituitary. He suggested I try florinef again ( i tried it once a long time ago and didn't like the side effects, but I didn't have a doctor at the time to consult about my meds so I just stopped taking it after 2 days). He wants to introduce medications one at a time so we know there is only one variable(i like this idea). If I'm doing well with florinef, he might add beta-blockers into the mix. If anyone in the Atlanta area is looking for a good cardiologist, I highly recommend Dr. Leon. He listens, is honest, very bright, and lets you ask as many questions as you want!! for as long as you want!! Did I mention he listens.. .. that was refreshing to me. So I will give florinef another shot, test my hormones, try manual therapy, biofeedback (highly recommend! google "emwave" )and in the mean time--hang in there like we all do I guess. Someday, they will find the answers- we are the guinea pigs. Thanks for listening* Maisie

Julie, Thank you for your post. You are so compassionate and empathetic. I'm glad Mack is bad to being a full time student. That's wonderful. What is your husband doing in Africa?! It's a magical place with magical people. I never thought about chronic fatigue syndrome- I will read into it and talk to my doctor. I read about manual therapy and I really respong to practices of this sort... cranial sacral/chiro/rolfing/reiki/physical therapy... Your suggestion sits well with me and I am going to call tomorrow. Thank you thank you. I also ordered Dr. Andrew Weil's book about 5 minutes ago!! haha. I've read one of his books before and learned a lot. As far as medications, I don't respond well to most. I am currently on the SSRI lexapro, multiV, wholefood adrenal support, magnesium and on occasion. (and of course salt and fluid as much as possible). I just have a gut feeling that there is something more than POTS going on here- hormonal feels right. In the past, I've tried florinef, mestinon, sudafed(?), klonopin, xanax... all with terrrrrrrible reactions. Licorice root made me really anxious and tachy.The only POTS med I can think of that I haven't tried is a beta blocker. But I have supine bradycardia and am almost always laying down.. I have an appointment with a cardiologist at Emory tomorrow so we will see what he says about BB. I will post again, apparently he's dealt with POTS patients before. talk soon! here goes nothin Maisie

That's interesting. I've been reading about hypopituitariusm and so much if it makes sense. I got on the phone this morning with my cardiologist and he's going to refer the to an endocrinologist. Thank you so much I will let you know how it goes. Maisie

Thank you both. My history: I've been a student at UGA since 2005. In the spring of 2008 I took the semester off to travel in Africa where I had a severe rafting accident on the Nile. I nearly drowned and suffered a sever concussion- that was the beginning. I felt strange and anxious for weeks following but was pretty much normal. Then, in April (4 wks after return to the states) I was tboned in car accident and got a 2nd concussion. (MRIs and CT scans came back normal) The dizziness got substantially worse after this car accident. I skipped summer school in 2008 because I was too weak/tired/POTSy though I didn't know that's what it was at the time. I had the tachycardia and pre-syncope but was told it was anxiety. From April to October of 2008 I improved greatly. I was walking fine, a full time student, about 80% back to normal. NEXT. February of this year, I got Mono. The dizziness reached a new level- I had to drop out of school and live at home. Since Feb I've gradually gotten worse. Went to MayoClinic in MN in Sept. and they said I've had POTS for 2 years. Now, and for the past 4 weeks, I'm unable to walk or stand. I'm getting weaker every week. That's the story. Seems like I've rePOTSed myself a couple times. . Thank you for your encouraging words. Maisie

I have POTS. I'm having to depend more and more on my Mom to do things for me. EVERYTHING- help me to the bathroom, give me sponge baths, bring me food, water etc... She CANNOT do all of this, she's at risk of losing her job because of missing too much work. Nor would I expect her to be able to.. She has a full time job 7 days a week. I'm totally at a loss of what to do and so is she. I need around the clock help. Does anyone else? What options are there? I feel like the only solution is some sort of inpatient care facility... seems extreme but I'd gladly take it. Something has to change.. thoughts?? thanks guys Maisie

noooooooo oh my! What is the world coming to!!? Really- you kept your cool.

xo

tearose, Yes my brother (he's 25 I'm 22) is my greatest support. He wanted me to share it with you all on the forum, too. The song is definitely an anthem isn't it! You're right, we do climb everyday. Mentally, emotionally, and physically. Sometimes we can stay at the top for while, sometimes we tumble all the way down. Fast or slow, hourly, daily, or weekly.. . Thanks tearose and I'm glad you like the song. It's been on repeat on my computer- Maisie

but my Oxygen saturation has always been normal. just sparked an interest cause so many of us feel we are not getting enough air!! wonder if there is a common denominator.. .

haha shout out to GA peaches** I'm also looking for a doc in GA. I found a cardiologist who's dealt with adult POTS patients but have yet to find a GP to manage everything.. or maybe an internist would be the way to go. I'm on the hunt as well, if I find one I'll let you know. Maybe we'll meet in a waiting room one day! get back to ya Maisie the cardiologist is Angel Leon at Emory Hospital. 404-686-7878 I haven't been to him yet, first appointment is Wednesday.

I was watching a documentary on climbing Mt. Everest. These superhuman beings spent 46 days on the queen mountain- videoing every step of the way. As the climbers reached higher altitudes, they began huffing and puffing, experiences heacaches, dizziness, loss of appetite, nausea, weakness, fatigue, racing heart (doubled HR, even triple for some). They'd say things like "It takes so much energy just to stand up!!". Does this sounds familiar??? The only symptom the climbers experienced that wasn't a symptom of POTS is higher blood pressure. As they lose oxygen in the thin air, their bodies produce more red blood cells, increasing their blood volume. So much so that some are at higher risk for heart attack until they descend the mountain. What are your thoughts on this? found it VERY interesting! on a totally unrelated note: my brother sent me this song by John Mayer. he told me to listen to the lyrics carefully. I teared up. I think many with POTS will relate.xo. http://www.youtube.com/watch?v=I6-QP5Wcvek...PL&index=26 Maisie

Thankful for: ALL OF YOU! Autumn leaves autumn leaves and autumn leaves** The brilliant color combinations mother nature comes up with, they are genius. My brother. Thankful that even with POTS I can still do something I love, and that's art.

thanks for sharing your sunshine!! so happy for you, congrats! xo

Yesss. I definitely gasp for air when I'm having an episode.. like there is a piano on my chest or I'm climbing Mt. Everest with no oxygen in the air. Does she have Asthma or any respiratory problems? Labored breathing/shortness of breath/ chest pressure-tightness are all symptoms of POTS and anxiety. I'd ask the doctor for peace of mind, but she is NOT alone. I have this symptom daily!! What I do is try to listen to some calm music, and drink some sort of warm fluid. The music is to help calm me, the warm fluids (tea usually) helps relax the muscles in your chest and stomach. Hope this helps, Maisie

Licorice root has helped a lot of people with less side effects,- but I know you are NOT to take it with Florinef. Which beta-blocker are you on? feel better Maisie

thanks to everyone for your valuable feedback, it's very helpful.

I have POTS (i think hyperadrenergic but that's not official yet) and my doctor suggested a very small dose of beta-blockers for my tachycardia. I have a near phobia of taking medication because of bad reactions I've had in the past.. though, I've never tried a beta-blocker. What I'm wondering is this.. I have bradycardia occasionally- HR gets down to 40. Have any of you with bradycardia tried beta-blockers? What are the side effects I can expect as a POTS patient.. (sometimes different than if a healthier person were to try beta-blockers)? Has it worked for you? What kinds have you tried? my doctor recommended Inderal.. The only medication I'm on right now is lexapro and homeopathic adrenal support supplement. Thank you all so much, sometimes I don't know what I'd do without this forum Maisie

Wow. I know both types of episodes you are talking about... unfortunately no I don't understand them either. My weak/dying/dizzy ones are usually at night. My body gets so tired and so limp I feel like I'm painted to a bed that's spinning on a turn table. And yes, those are the depressing ones for me, too because I feel I have no control over my body--like I couldn't run out of the house if it caught fire.. you know what I mean? The chest ones have started recently with me, within the last month. I don't know how to describe the feeling really.. almost as if my esophegus is spasming and then radiates to other parts of my chest. I'll get a weird pulling feeling in my chest.. like someone has a hold on my chest muscles and won't let go. My heart starts to beat in the base of my throat.. I take a few hours to recover as well. I don't konw if my description makes any sense... but you are NOT alone. as far as walking around, I did that, too when I was able to walk. Sitting still made the dizziness much louder and more obvious- for me it was helpful distraction. feel better. i know it's frusterating Maisie

hmm... do you know about how much salt you are taking in? sometimes I get that feeling you described when I haven't had enough water with my salt. I didn't stay on fludro long enough to experience many side effects.. one day was enough for me. But from what I've read on the forum, fludro has helped so many people once the side effects subside.

Brianala, yes I've always been the same way.. I have no idea if it's a dysautonomia thing. But I have an eerily high tolerance for pain, but a low tolerance for discomfort like nausea/dizziness/chest pressure etc.. I've also had comments from doctors in the ER from multiple sports injuries about my strangly calm disposition. But my injuries just actually didn't hurt that bad. interesting.. sorry about your wrist* Maisie